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Make it stand out Rare Generation (from left to right, top to bottom): Julie Frazier-Smith, Christof Zanecchia, Erika Cramp, Rich Cramp, Melody Zanecchia, Matthew Frazier-Smith, Chris Fogal, Tim Venchus, Angela Carota-Dusing, and Kerry Venchus https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/96217587-a9ad-4926-b3c1-a9776d2e04cd/Setlist+Rare+generation+.png.PNG Updates - Community Concert Colours Shine Bright on <span class="sqsrte-text-color--white">Rare Disease Day, 28th February 2025</span> - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1741947642370-HLRQ8WDVQCX02MKFG0D7/Concert_Rare_25_-4.JPEG Updates - Community Concert Colours Shine Bright on <span class="sqsrte-text-color--white">Rare Disease Day, 28th February 2025</span> https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1741944406051-U6V3591NZGOAU0G86U8C/Screenshot+2025-03-14+at+10.10.18.png Updates - 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Community Concert Colours Shine Bright on <span class="sqsrte-text-color--white">Rare Disease Day, 28th February 2025</span> - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.eicureproject.com/updates/reps-for-rare-dance-challenge-2025 monthly 0.5 2025-02-02 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/89346f96-b5dd-48f2-a501-b851e168a99f/IMG_0698.PNG Updates - Reps For Rare Dance Challenge 2025</span> - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.eicureproject.com/updates/rare-disease-awareness-month-february-2025 monthly 0.5 2025-02-04 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/698ff7b4-efab-4092-901a-9c6fe02b0252/IMG_0548+2.PNG Updates - Rare Disease Awareness Month - February 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/556ecbe8-1bb4-4813-a073-3370cd3284d4/Copy+of+Rare+Disease+Awareness+Month+2.png.PNG Updates - Rare Disease Awareness Month - February 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/ed1449cf-2363-4f33-9de8-af765f87abc3/IMG_0696.png Updates - Rare Disease Awareness Month - February 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/69a60a01-8b42-4408-8247-f4ae643fa869/IMG_0505.PNG Updates - Rare Disease Awareness Month - February 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.eicureproject.com/updates/research-grant-award-winners-2024 monthly 0.5 2025-03-23 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/b5bfff87-0cc4-4425-a6e6-2b896310977d/IMG_8060.JPG Updates - Research Grant Award Winners 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1726650058143-5ZWL87HA1OWRFSNURDX1/IMG_8120.JPG Updates - Research Grant Award Winners 2024 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1726650058102-G02H9SEEMFE57GM1PH64/IMG_8121.JPG Updates - Research Grant Award Winners 2024 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1726650059438-KAOBVPQQTSQ1W0C6B4D1/IMG_8122.JPG Updates - Research Grant Award Winners 2024 https://www.eicureproject.com/updates/iam2024-colouring-competition-winners monthly 0.5 2024-06-09 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1717966932654-EEUEOA457OXKWGUXMIKK/Screenshot%2B2024-06-09%2Bat%2B22.58.34.jpg Updates - #IAM2024 - Colouring Competition WINNERS! - Charlie - Age 4 - Norway https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1717966769171-0PXH5GG1QRXOQCON5V1B/Screenshot+2024-06-09+at+22.58.53.png Updates - #IAM2024 - Colouring Competition WINNERS! - Emilio - Age 5 - Switzerland https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1717966764261-36VOP868UNH6OQ52EW3W/Screenshot+2024-06-09+at+22.58.09.png Updates - #IAM2024 - Colouring Competition WINNERS! - Filipo - Age 5 - Italy https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1717968820936-ZNAW4HFZZC7BX6OCKEQ0/IMG_5430.jpg Updates - #IAM2024 - Colouring Competition WINNERS! - Andrea - Age 6 - Italy https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1717967273058-425ZFINIAYFO5AE5EJDT/IMG_5431.jpg Updates - #IAM2024 - Colouring Competition WINNERS! - Mita - Age 6 - Russia https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1717967234301-3WVKLYF0RDNDH3MM57EO/IMG_5435.jpg Updates - #IAM2024 - Colouring Competition WINNERS! - Alisa - Age 6 - Switzerland https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1717968202202-YNLPSMA3J9ESJTF3WSN3/IMG_5383.jpg Updates - #IAM2024 - Colouring Competition WINNERS! - Liza - Age 7 - Russia https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1717968277291-GMWUOYFMHOEJ4GNYIKDD/IMG_5374.jpg Updates - #IAM2024 - Colouring Competition WINNERS! - Emma - Age 7 - Germany https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1717968233774-95VNREHHFNXJSG4B858H/IMG_5372.jpg Updates - #IAM2024 - Colouring Competition WINNERS! - Fiona - Age 7 - USA https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1717968666910-WDQI48E646P4KUD7N3XF/Screenshot+2024-06-09+at+23.29.41.png Updates - #IAM2024 - Colouring Competition WINNERS! - Varvara - Age 9 - Russia https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1717968666816-5KYJQMF10X6CAX6FQWHJ/Screenshot+2024-06-09+at+23.30.04.png Updates - #IAM2024 - Colouring Competition WINNERS! - Cecilia - Age 8 - Switzerland https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1717968672969-49CB091HAA2BFCYXTG40/Screenshot+2024-06-09+at+23.30.28.png Updates - #IAM2024 - Colouring Competition WINNERS! - Giuseppe - Age 9 - Italy https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1717968929177-SZ6JZ3461DOXQ78N0MEV/b4e8ef85-d3e9-4cba-ba6d-0c4e7c2015ef.jpg Updates - #IAM2024 - Colouring Competition WINNERS! - Lucy - Age 10 - Australia https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1717968930322-SPWBCRDWC983FML0XTTE/ebb9d710-b081-40e7-8bb3-cd2212e6b728.jpg Updates - #IAM2024 - Colouring Competition WINNERS! - Kailey - Age 10 - Australia https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1717968929143-MCQ5NQ5KVKK9V6CB5KHN/84c03c2e-c5c2-49b8-8473-1b1c59901e6a.jpg Updates - #IAM2024 - Colouring Competition WINNERS! - Luca - Age 10 - Australia https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/bdff072b-b235-460a-847b-b41847e4a6b1/IMG_5496.JPG Updates - #IAM2024 - Colouring Competition WINNERS! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.eicureproject.com/updates/race-day monthly 0.5 2024-06-12 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1718052093328-MP3HR5IJAYHHC8KCO1BC/Screenshot+2024-06-10+at+22.39.36.png Updates - EI Cure Project kids BRING IT on Race Day! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1718052097640-C9S4BP5UN2NKDD6VUHK1/Screenshot+2024-06-10+at+22.40.27.png Updates - EI Cure Project kids BRING IT on Race Day! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1718052100218-JR2ENXHG4S4PQ8RS43ED/Screenshot+2024-06-10+at+22.41.01.png Updates - EI Cure Project kids BRING IT on Race Day! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1718052092170-H0DFYF2PJMZIGFYJDYNN/Screenshot+2024-06-10+at+22.39.56.png Updates - EI Cure Project kids BRING IT on Race Day! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1718092537243-KMOZ2VNDBYBASXPY8S8L/Screenshot+2024-06-11+at+00.07.17.png Updates - EI Cure Project kids BRING IT on Race Day! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1718092557608-XLFIS4F00IG1SJQ1OWB3/Screenshot+2024-06-11+at+00.08.30.png Updates - EI Cure Project kids BRING IT on Race Day! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1718095401594-VL66MO3D02K7MWT8QE6A/Screenshot+2024-06-11+at+00.08.13.png Updates - 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Velvet’s Vintage honours Baby Cameron - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709672248809-LL4B176AKR1SSEBU4I6C/IMG_3999.jpg Updates - Velvet’s Vintage honours Baby Cameron https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709672248769-UMQ8T7WYT4I1MHCDQHQZ/IMG_3998.jpg Updates - Velvet’s Vintage honours Baby Cameron https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709717931497-OWGWXQQCGE3P8AXPIJKE/938a38d6-8f2c-48a7-9fbb-496d5e1001e0.jpg Updates - Velvet’s Vintage honours Baby Cameron https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709672250085-WXCF1LIK68PEI1T2UIHR/IMG_4003.jpg Updates - Velvet’s Vintage honours Baby Cameron https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709672161344-5R29M3PZFQ4O2DNCFCYE/IMG_4007.jpg Updates - Velvet’s Vintage honours Baby Cameron https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709718005041-2P7DY1HUO34NRE7OF1Z2/27442db4-be82-44c3-8620-a6233d1c1514.jpg Updates - 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Velvet’s Vintage honours Baby Cameron https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709672424994-N0B9P89WPH050KLSFLN2/IMG_4017.jpg Updates - Velvet’s Vintage honours Baby Cameron https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709672461224-PANZZERQZ7CG8HVUH9SJ/IMG_4010.jpg Updates - Velvet’s Vintage honours Baby Cameron https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709672462790-OR520PKN56S3YSR7E5P4/IMG_4011.jpg Updates - Velvet’s Vintage honours Baby Cameron https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709672462637-XM2XXNGIFNZ1X7LNGYP0/IMG_4012.jpg Updates - Velvet’s Vintage honours Baby Cameron https://www.eicureproject.com/updates/a-game-night-to-celebrate-brennan-lewis monthly 0.5 2024-03-06 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/08a76331-46c0-40dc-8013-e1a62bf64f22/IMG_6622.jpg Updates - A game night to celebrate Brennan Lewis - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709723943437-3XQHUE0FVT6TAZH9N2C7/IMG_6619.jpg Updates - A game night to celebrate Brennan Lewis https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709724118770-VOPOGMTOHACKPPO8LEET/IMG_6623.jpg Updates - A game night to celebrate Brennan Lewis https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709723669554-GLNGYUEVQBJYVLRX8SNP/Screenshot+2024-03-06+at+12.12.53.png Updates - A game night to celebrate Brennan Lewis https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709723633669-QCBMD5513U0M9VFZMSX0/Screenshot+2024-03-06+at+12.09.44.png Updates - A game night to celebrate Brennan Lewis https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709724776946-QKX5ZSO9DKAOEG9YD71A/Screenshot+2024-03-06+at+12.11.06.png Updates - A game night to celebrate Brennan Lewis https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709724817947-0F1HOMT497024X8RH3RL/IMG_4132.jpg Updates - A game night to celebrate Brennan Lewis https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709724776769-WN1VPBB2MU2HTNKF9F9M/Screenshot+2024-03-06+at+12.11.21.png Updates - A game night to celebrate Brennan Lewis https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709724818002-D8LGC9GF8WPSYON4ZHUR/IMG_6274.jpg Updates - A game night to celebrate Brennan Lewis https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709725961492-HD38QFROG37GX63AWTU4/Screenshot+2024-03-06+at+12.10.37.png Updates - A game night to celebrate Brennan Lewis https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709725960517-DCQNM2EGFYOYITTV6SFW/Screenshot+2024-03-06+at+12.10.13.png Updates - A game night to celebrate Brennan Lewis https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709726050651-EF4ECCY32QET08FRIYA0/Screenshot%2B2024-03-06%2Bat%2B12.09.23.jpg Updates - A game night to celebrate Brennan Lewis https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709725929556-HOH8GL09M1OJI01035Y3/Screenshot+2024-03-06+at+12.07.58.png Updates - A game night to celebrate Brennan Lewis https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709725934873-EXER29ZHRG76A62BDLAR/Screenshot+2024-03-06+at+12.08.35.png Updates - A game night to celebrate Brennan Lewis https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709726219042-XZ0ODI9QZTO5E33H67TU/Screenshot%2B2024-03-06%2Bat%2B12.09.59.jpg Updates - A game night to celebrate Brennan Lewis https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709725936837-G9LPMOQZHUHWTXHEY3O8/Screenshot+2024-03-06+at+12.08.55.png Updates - A game night to celebrate Brennan Lewis https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1709725930558-7JNWJPQLJU3OHBZH5BVV/Screenshot+2024-03-06+at+12.08.22.png Updates - A game night to celebrate Brennan Lewis https://www.eicureproject.com/updates/ei-cure-project-canada monthly 0.5 2024-02-09 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/9758ac61-52ec-4391-ad40-074906e8a151/EICureLogoCanada1.png Updates - EI Cure Project Canada - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1707484320911-IE1YEJ4SMJBPX879CRMS/Rachel%2BWagner_Board%2Bpicture.jpg Updates - EI Cure Project Canada https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1707484475301-C0IWLF8GRDOXOEHFCAYL/Jordan%252BArndt_Board%252Bphoto.jpg Updates - EI Cure Project Canada https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1707485673294-IBT12K56JX7E7X8R3GXX/image-asset.jpeg Updates - EI Cure Project Canada - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.eicureproject.com/updates/repsforrare-campaign-2024 monthly 0.5 2024-03-17 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/718243d0-dc2a-4415-989e-518bc77397ee/Reps+for+Rare+Challenge_March+13.png Updates - #RepsForRare Challenge 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/36ae8de4-9513-4e7f-a189-b33f40c0e113/FINAL+infographic.png Updates - #RepsForRare Challenge 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1707032674427-VDNP06WXGEF862HZGJ6Q/Screenshot+2024-02-04+at+08.44.01.png Updates - #RepsForRare Challenge 2024 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1707032543649-LGDWJVPJZ0F0C6TBKOLV/Screenshot+2024-02-04+at+08.34.37.png Updates - #RepsForRare Challenge 2024 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1707032737500-8RYSH9GSX82ZTK8O0TEK/Screenshot+2024-02-04+at+08.37.57.png Updates - #RepsForRare Challenge 2024 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1707033365117-KMU4E7XWT07AIS804L5K/Screenshot+2024-02-04+at+08.52.56.png Updates - #RepsForRare Challenge 2024 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1707033290446-DPI18JNDXAQVA30WNHAE/Screenshot+2024-02-04+at+08.50.50.png Updates - #RepsForRare Challenge 2024 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1707032771372-U821OZT373QXMOCXMJB3/Screenshot+2024-02-04+at+08.38.16.png Updates - #RepsForRare Challenge 2024 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1707033410767-ONOJY42ZUFZB3ZK24HZX/Screenshot+2024-02-04+at+08.51.52.png Updates - #RepsForRare Challenge 2024 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1707033485261-HAKISAO6BSUGIUIZ0DX4/Screenshot+2024-02-04+at+08.48.37.png Updates - #RepsForRare Challenge 2024 https://www.eicureproject.com/updates/research-presented-in-japan-at-isid-2023 monthly 0.5 2023-11-17 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1700135205903-UF149EHNOGESXWQRKGNE/Screenshot+2023-11-15+at+21.17.16.png Updates - Research presented in Japan at ISID 2023 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1700135223143-XMYGMELJBKPUMH5Q03OE/Screenshot+2023-11-16+at+12.44.14.png Updates - Research presented in Japan at ISID 2023 https://www.eicureproject.com/updates/ellen-kelly-lill-eulogy monthly 0.5 2023-09-23 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695332733386-5YFPNKANG8JXPC83QOFJ/IMG_1608.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695490103951-XX0WC7Q7EMGHL5TGQIKL/IMG_1616.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695490282555-GKQJVGQ4L4HELE6QAVVM/IMG_1611.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695474230869-7A3W0H7VEE3ELC00WDN5/IMG_1620.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695333895461-JMR4H6YCAEQWTH0NCZ5B/IMG_1613.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695490432772-VTRBMFH1BT2Z684ZYWFO/IMG_1602.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695334225583-T7XLH1JX14SSXGU9X2BP/IMG_1597.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695334026317-I30VCG49QZ366GQLGSIO/IMG_1617.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695490539641-2YJ9OTCZ5PMN8MRHRRP6/IMG_1636.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695490539581-T09LV0RFYH2UD1UJA0SQ/IMG_1635.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695334048294-EIW6NR2WZ70RTMI02VO4/IMG_1606.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695334116847-SUV9KI9W73E566BXBAYB/IMG_1604.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695334083508-V784Y3JFPZB2PJSNFZXN/IMG_1615.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695334344212-BSDDH76ALHRA7SK5TGNK/IMG_1607.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695334411888-YE1PHS2H4ZFSJLZICHXA/IMG_1600.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695334458324-XCFY8BLHFHG91MJJER7X/IMG_1609.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695490742547-R66JN6SQEGYI6H7NK357/IMG_1603.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695490893514-HZ4WQHCIQXOFD5ETOF38/IMG_1634.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695334546456-9GDG09XT12W5AXJ4YVKA/IMG_1598.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695334580938-KIO42Z3JIE28S1EU7HV6/IMG_1618.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695334557507-M6S9I0C6263F9EY7GDLJ/IMG_1599.jpg Updates - In honour of Ellen Kelly Lill https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/408b29ac-26c7-46a3-bc6e-c715848d0685/IMG_0755.jpg Updates - In honour of Ellen Kelly Lill - Make it stand out Ellen’s six grandchildren (In order, left to right): Sébastien, Arienne, Delphine, Margaux, Thibaux, and Emmie https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695491185661-V7QH7QB2N4HNFNDFIRD3/IMG_1632.jpg Updates - In honour of Ellen Kelly Lill https://www.eicureproject.com/updates/andrew-the-log-drivers-waltz monthly 0.5 2023-08-15 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692106151154-WD487S7VEY07C9R4RS43/IMG_1152.JPG Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692106149265-O7FPZADRL0HSYVJ6JLKN/Andrew+chateau+d%27oex.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692106150035-KW06ZKF2XQYEFPZRY06V/IMG_0328.JPG Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692106150382-R2QFKWUWKU764C09GKD9/IMG_0654.JPG Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/45bb7196-a166-4744-95da-1fa0cfe82fe2/grand+depart.png Updates - Andrew and The Log Driver’s Waltz - Make it stand out Andrew Durand and the other riders at ‘The Grand Depart’ of the Log Driver’s Waltz, July 29th 2023 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692049161127-8ALW22AZ83XREENQES8L/California+Road.png Updates - 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Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692087434885-N9Y3IWHOQO7W8BHD3KVR/Sunrise+Day+4.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692087430382-6XJ2BDT02CD2XB9S4JIF/Day+4+climb+trails.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692087428907-ZOALQ5EHSKJAHOVY43CD/Day+4+climb+trails+2.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692087432204-2NOPY0VHH10H5WLSH6MY/Namesake+LDW+1.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692087433047-BEJ4ZFCIQ7GOL0NFJKJW/Namesake+LDW+2.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692087435340-7OF4S0FGC5FSQJ286Y4G/Wakefield+637km.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692087437344-9U2YD73SIQ1YZ0GZP3I7/Wakefield+covered+bridge.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692087436691-9Q4OXEPBY8ZTSZMJT3RY/Wakefield+covered+bridge+2.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692087430665-ZG27VKCN9B5MSADMT0QR/Day+4+depanneurs+2.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692087431690-8G0XM3Y4CTIWM9LJ5LAM/Day+4+depanneurs+rest+stop.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692087433532-LS33GVU2AABHTMGGGLZV/Night+4+refuge.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692087434119-77KLFFH3OXEELLE3Z3YL/Night+4.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692088148716-YY4QTTKSZSAF7F92882C/Ottawa+parliament.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692088149427-PBQDO42QB5UZZ8E8PQA8/Peace+Tower.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692088146700-I39QGSOEP46H06IV7949/Carleton+Place+787km.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692088145359-IH34L7ODD9FCEC486VTC/Almonte+805km.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692088145230-D3ASGBDNEO45K5C2FJVG/Almonte+805km+2.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1692088147201-T41W984QB2BBLW3210VN/Legend+complete.png Updates - Andrew and The Log Driver’s Waltz https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/987c4a84-2591-40c3-8da2-9fe83691083a/Andrew+success.jpg Updates - Andrew and The Log Driver’s Waltz - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.eicureproject.com/updates/super-susies-special-birthday monthly 0.5 2023-09-28 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695919471445-MV0LM63HRSKUM7TT2ZBQ/IMG_4683.jpg Updates - Super Susie’s Special Birthday! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695919435528-M7AX5FZWCK2ECZKKSTXT/65077e27-47b3-4260-9c58-998d30c2ea36.jpg Updates - Super Susie’s Special Birthday! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695919831103-X2EZR5XJPGG7L3NUXOR1/8c4c6a6c-fe17-4a47-8a1b-3e89088278a5.jpg Updates - Super Susie’s Special Birthday! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695919449743-CUWZK1BP9UH54SZDSNX7/abf0d07f-8854-4393-be72-0df3a406c6fa.jpg Updates - Super Susie’s Special Birthday! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695920844056-FGAVBQOKE7AXHNW8FNNC/IMG_0509.jpg Updates - Super Susie’s Special Birthday! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695920208595-CQOMXV3FVMAGO0Q20RUG/a77d743b-71cf-4260-962e-f9d46e069098.jpg Updates - Super Susie’s Special Birthday! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695920844876-DLZ8YFQ5LI4T8U2S26ZH/IMG_0514.jpg Updates - Super Susie’s Special Birthday! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695920803240-MZGAUMJMCC49WJFDP9J8/IMG_0523.jpg Updates - Super Susie’s Special Birthday! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695920846632-LN1CE28D11U3YERKYTRO/IMG_0520.jpg Updates - Super Susie’s Special Birthday! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695920845359-QH99SIZWTX1R53UNJKLG/IMG_0515.jpg Updates - Super Susie’s Special Birthday! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695921987375-TR1WD0ZH37OWXFPMMRTY/ff9250a5-a108-4052-8a36-01ff8db1ae74.jpg Updates - Super Susie’s Special Birthday! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695921986884-2H1M1SPZEFSMWYFGQJ2H/adf38b76-3a81-4c4f-a9d0-bef045102596.jpg Updates - Super Susie’s Special Birthday! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695921985680-MUZNX4JKXJAMCJDCP6YF/8c4c6a6c-fe17-4a47-8a1b-3e89088278a5.jpg Updates - Super Susie’s Special Birthday! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1695921985832-WT8EI1I1RS4RTJAKSOL9/291b67e1-464d-4b41-b968-74d49bdff280.jpg Updates - Super Susie’s Special Birthday! https://www.eicureproject.com/updates/the-racket-man monthly 0.5 2023-07-13 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/39b67e1a-5e08-48a9-90c3-731840334bec/IMG_4150.jpg Updates - The Racket Man - Make it stand out Meet Jeff Lill AKA ‘The Racket Man’ https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689284923276-N3LTWLUQO4Y4ARO5TI81/IMG_4157.jpg Updates - The Racket Man https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689284921307-2ZK9HCHKCU0FOCZ93VXL/IMG_4138.jpg Updates - The Racket Man https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689284923399-AN9B3WTPLZWOPAR3LIHT/IMG_4187.jpg Updates - The Racket Man https://www.eicureproject.com/updates/scenic-trail-run monthly 0.5 2023-07-14 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1f75eb07-90ce-430d-8e3b-3d7d8df6a8c2/IMG_4132.jpg Updates - Kids reach for the sky at the Scenic Trail Race! - Make it stand out On June 24th our kids and their best friends did some fundraising of their own, and took part in a sponsored Scenic Trail race in Tesserete of Ticino, Switzerland (Pictured from left: Sébastien Lill, Sara Yo, Delphine Lill, Arienne Lill, and Mati Yo). https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689262415230-FE53HCWQJIR0SAP0H6RK/IMG_9667.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689262415186-3C8HRP1A4UFCYIWQRVC6/IMG_9670.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689262418305-ZBA4OK6UWK5C3QYK8C4R/IMG_9671.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689262418394-P6BRSU4YT4OWOULCTL5Y/IMG_9674.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689262420428-PHPFOZXAMWLSA5U3EAQG/IMG_9679.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689262422566-KI3J7MGDLKLYXAHZ6S9Q/IMG_9699.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689262424593-GXJUL84GG5I28GVZKBS2/IMG_9706.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689262425007-O28L8OS19BZ62NS6QU5D/IMG_9709.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689264483716-82SOS3JGJXJK1OECA3CD/IMG_0010.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689263429799-MH5XCIR630BSRL1GHVH7/IMG_4125.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689263425771-Q9NCJMLSZX6W4GAZP12B/IMG_4083.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689263427879-P3DEEVJ6KOJ3J9F7K3LL/IMG_4099.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689263428132-ARPL56CNT10WX17LP5Q1/IMG_4108.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689264508383-VWQYSKUM6KVAGCX9H26B/IMG_4111.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689264484671-CQ1SIRSGLKIECP4AI21B/IMG_0016.JPG Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689264483669-WF7R3AS0CAMC7Q1J3SXS/IMG_0013.JPG Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689279807823-S2CECQ90IMICY3FMV1RI/IMG_9715.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689279761991-B38C13Q19NMXEFWMDOH0/IMG_4132.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689279807811-VBE81L59TR1ANLAUI7YE/IMG_9722.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689279808812-7DIWBVR44EWLHI2U2S66/IMG_9729.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689279779950-ZZQGSCZSB4AV6G9XPDRA/IMG_9682.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689279808964-F7NA5V6SK5SVJE3YZQLJ/IMG_9730.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689279735596-KCCP3E61SKPGV7S86JEE/IMG_4086.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689279735511-MTV6PYN07KGINT8L2BVZ/IMG_4085.jpg Updates - Kids reach for the sky at the Scenic Trail Race! https://www.eicureproject.com/updates/singing-sensation-in-stratford monthly 0.5 2023-05-19 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/4bf044d3-fd36-4f3e-aac4-0a39f5758341/Stratford+vocals+flyer.jpg Updates - Singing sensation in Stratford! - Make it stand out In an event organised by Catherine Jeffs (Red top, far right), the Stratford Vocals and the Golf Club Choir raised £1600 for the EI Cure Project https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/b8727c2f-1121-48fc-bfce-e1d726bdc541/Daddy+and+Jon+photo.jpg Updates - Singing sensation in Stratford! - Make it stand out My Dad, Roy Summers with friend, Jon Jeffs testing the microphone before the event. https://www.eicureproject.com/updates/family-lark-success monthly 0.5 2023-07-14 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/80b2d435-af60-4e4c-981f-266dfa284df8/Jordan+Lark+Fundraiser.jpg Updates - Family Lark success! - Make it stand out Jordan Lark handing a cheque to his sister Hannah for £3,200 to be donated to the EI Cure Project https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689328809416-HC916GENE432KDNOLFZF/IMG_0036.jpg Updates - Family Lark success! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689328809593-32A8W1175IG1B52B7IFB/IMG_0037.jpg Updates - Family Lark success! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689328812112-OR2P88P6IWQ51MKY34H5/IMG_0039.jpg Updates - Family Lark success! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689328813112-7Q7WMJJWCVMSXM101D0R/IMG_0040.jpg Updates - Family Lark success! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689328811877-BNEB38L7BY4QC0I1VB17/IMG_0038.jpg Updates - Family Lark success! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689328883372-6JTYL7ZQVKJP8XCSZK77/IMG_0041.jpg Updates - Family Lark success! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689328814485-89MIK0HVX5TZCAT6B27R/IMG_0042.jpg Updates - Family Lark success! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689328770361-Y5DST0GJW4723ENGU0B4/IMG_0043.jpg Updates - Family Lark success! https://www.eicureproject.com/updates/ei-cure-project-becomes-a-swiss-association monthly 0.5 2023-05-08 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/cf99662f-17f4-4f04-b382-3fff4acb3ef0/Screenshot+2023-05-08+at+12.00.27.png Updates - EI Cure Project becomes a Swiss Association - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.eicureproject.com/updates/collaboration-with-ichthyp-foundation monthly 0.5 2023-05-08 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/e4ff7bc8-28a9-45ea-853c-eb7a7da82795/ICHTHYP+logo.jpg Updates - Collaboration with ICHTHYP foundation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/96ac46d8-c17e-4486-bafc-cd344e6f66ab/Screenshot+2023-03-14+at+15.14.52.png Updates - Collaboration with ICHTHYP foundation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.eicureproject.com/updates/rare-disease-day-february-28th monthly 0.5 2023-07-14 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/f2f44c1e-0210-4c3b-a330-df99e528f54e/IMG_8053.jpg Updates - Rare Disease Day - February 28th - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689340528219-06JQ3YYQO0D65O4HHONI/IMG_8059.jpg Updates - Rare Disease Day - February 28th https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689340526633-H7ZR3DSNCFKL5MF7SK4Z/IMG_8057.jpg Updates - Rare Disease Day - February 28th https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689340533726-J8LVV5LEFEZ4QRPO6L0G/IMG_8067.jpg Updates - Rare Disease Day - February 28th https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689340534843-ITXQXWAX43V1569UV3OQ/IMG_8069.jpg Updates - Rare Disease Day - February 28th https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689340525079-6ADGAHA33ETT07YXO775/IMG_8055.jpg Updates - Rare Disease Day - February 28th https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689340529658-JRE1NXIIO042135XMFCH/IMG_8060.jpg Updates - Rare Disease Day - February 28th https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689340529544-53T49LNJ35J74G02VC28/IMG_8061.jpg Updates - Rare Disease Day - February 28th https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689340530844-TBOYCJTFEIZA3ZO4THYC/IMG_8062.jpg Updates - Rare Disease Day - February 28th https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689342538607-ZXK0HTY70MHM99RXZHWS/IMG_8053.jpg Updates - Rare Disease Day - February 28th https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689340632643-NKTIR814YRLMWMMKEFSR/IMG_7857.jpg Updates - Rare Disease Day - February 28th https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689340531069-66FHAXKCU8LFDR8XWE5T/IMG_8063.jpg Updates - Rare Disease Day - February 28th https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1689340526530-HWFKM4A9RSQAHXDZ39CO/IMG_8056.jpg Updates - Rare Disease Day - February 28th https://www.eicureproject.com/updates/30000-in-30-days monthly 0.5 2023-05-08 https://www.eicureproject.com/updates/new-logo-design monthly 0.5 2024-05-22 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/d25f9ebe-b2b6-4f85-9eed-ede40d7c859a/EICure_Logo2.png Updates - 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Meet Thala A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/c7fef91d-13d3-4e0e-a3d4-e378030463d5/01DEDCBD-11A6-4CF0-9306-CFBE02EBA855.jpeg Faces of EI - Meet Thala A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/7a6617f0-8cc2-4b46-928c-dcbbe41a12d3/AA7A31B7-543B-4803-BEBF-85F9E39DC07C.jpeg Faces of EI - Meet Thala A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/abcba85e-2afb-4d53-a04f-92e5edbbd2f2/1D9C8005-21B5-444B-8833-D351E97C707D.jpeg Faces of EI - Meet Thala A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/8346374f-5c22-4821-9655-a6ecb450fa8e/D2D240FF-DACC-490D-8751-A61725F5A47F.jpeg Faces of EI - Meet Thala A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677793414519-OVW47M7LYCFI35E19DZF/265FED59-A398-414E-8252-DF10C51CA77D.jpg Faces of EI - Meet Thala A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677842505069-NECBWQAKZ8JQFSXBPUO9/506A7AC1-CA27-4F2F-8B2D-37E9BDAD2F3D.jpg Faces of EI - Meet Thala A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://www.eicureproject.com/faces-of-ei/meet-rebecca monthly 0.5 2024-06-21 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/0e385986-9583-4b30-99c4-022b9d7dd6fa/3656D2C5-24F6-4568-958F-C93CC12DA2D3.jpeg Faces of EI - Meet Rebecca Baby with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677948302836-G1RD6XQX53LMRC939MZJ/F4515A12-D4DF-4E7F-A484-A3C2ADAB81FF.jpg Faces of EI - Meet Rebecca Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677841645843-LM6BXCAKUZN52EQIO6O6/6DF6B7CD-E8E3-49FF-B5F1-3951B893FEE4.jpg Faces of EI - Meet Rebecca Mum with daughter and son. The daughter is affected with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/ca082b00-1980-4af7-912c-ad75cc1c1f46/7944455B-341D-4581-9355-1A7652B2A613.jpeg Faces of EI - Meet Rebecca Hands from a mother and daughter affected with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/3f3fb448-f1c9-4fd0-bffb-ca141c0c7b14/4DC5A399-5EAB-4FA6-B1BE-2B5DF4D64B6F.jpeg Faces of EI - Meet Rebecca Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677841618197-JIB0HM0YXJIW3XOM241L/0775F86A-49F0-406A-A019-776B635034CE.jpg Faces of EI - Meet Rebecca Mother and Daughter, both are affected with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677841693260-7OCQZ1W4597UNR0X9S7O/931D42DC-96B1-4612-B4E5-7274345064D4.jpg Faces of EI - Meet Rebecca Mother with Son and Daughter. Mother and Daughter are affected with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/d5585891-5b70-4e60-ba17-3b93f608b8c2/825FF7A9-997B-48C9-83DD-6D00937E3A6C.jpeg Faces of EI - Meet Rebecca Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://www.eicureproject.com/faces-of-ei/meet-brentley monthly 0.5 2024-06-21 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/615be572-52ad-4343-aff6-6d1078391437/7B4399F7-C33B-475C-A2BC-DD42EFFD27F5.jpeg Faces of EI - Meet Brentley Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677795760762-S3QMGXUF2VCB3CW5UJVQ/E23D1AE0-4B38-4426-92F5-266085664352.jpg Faces of EI - Meet Brentley Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677845074536-9J866O1DHAUYF3JICICE/1817FBC1-34DE-4D40-B499-536CBA96B05B.jpg Faces of EI - Meet Brentley Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/b599b1da-e3e9-460c-a7f6-bcfd28beaf03/9DB0FA3D-C45A-4E67-A1BA-1D56BBC3738E.jpeg Faces of EI - Meet Brentley Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/3df216a5-b633-4288-b7ea-84aedbaefb17/3FBE7C0A-2761-421D-806E-D49A696821C5.jpeg Faces of EI - Meet Brentley Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/a533b8c6-b0d6-4741-9fbd-44536d7a3a10/314A34F1-43DC-4401-BA78-562462B0C492.jpeg Faces of EI - Meet Brentley Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677795703334-7HDSA8P779X5PIVDM7I2/3C99B651-37D0-4E2B-9C94-811CB669A2EC.jpg Faces of EI - Meet Brentley Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1bea9eab-0d59-43c9-be88-def53843d297/BA20C975-DAFF-4D68-8D56-6BD1755BF724.jpeg Faces of EI - Meet Brentley Child with Epidermolytic Ichthyosis and Plantar-Palmar Keratoderma (PPK) caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677795816339-9KAN3DD52J335JTL3EM8/4DAC4D11-C06A-4DCB-8DB7-74D2662EFBBF.jpg Faces of EI - Meet Brentley Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://www.eicureproject.com/faces-of-ei/meet-elyssia monthly 0.5 2024-06-21 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678092812983-KU4BSRDNR1XYETC2BVY9/9981CD88-8B3B-4D35-9B15-4E93C2157226_1_201_a.jpg Faces of EI - Meet Elyssia Child with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678092559523-F12UUBJAKQ1FFWNUA8TS/F03D0BD2-7012-484E-9455-10D04419B48A.jpg Faces of EI - Meet Elyssia Child with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678092471576-EDT3NA9B086Z71Q7FR49/67ED212B-EF39-47C7-93C7-4D6B3DF68AB9.jpg Faces of EI - Meet Elyssia Child with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677840570962-092KQPPRK2HRAXCGL1ON/1C95DBD8-C7B9-4072-BB8C-924922CF8892.jpg Faces of EI - Meet Elyssia Child with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/27cdf095-58fb-40a3-bad0-b1036c98fcdc/55680E02-BCA6-427B-8145-53CC028D6E2C_1_201_a.jpeg Faces of EI - Meet Elyssia Baby with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678092514643-695MNV7LP33222WQKQO2/3D28B716-24DD-4155-AF0C-F11F15458B98_1_201_a.jpg Faces of EI - Meet Elyssia Child with Epidermolytic Ichthyosis and Plantar-Palmar Keratoderma (PPK) caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1f25f5cf-fdf1-4e2a-941f-c299c6aaf648/DB74518E-13E6-48E4-9010-3F133B1CA06B_1_201_a.jpeg Faces of EI - Meet Elyssia Family of a child with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677840513506-CIKSYZSYVF3VWWM2WTL3/6138A074-8B34-4713-A5DC-FD19AAB37512.jpg Faces of EI - Meet Elyssia Child with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/406de17e-695e-4fe5-9b72-dfe7a456961c/34B1E859-510D-40DD-BC0C-3AFF60A2F452.jpeg Faces of EI - Meet Elyssia Child with Epidermolytic Ichthyosis caused by KRT1 genetic variant. Image of a foot with a bacterial skin infection. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678092626981-B1YINYXU0H2WXV182TCX/EBF09874-817B-4320-BFEF-A98D3E8373A1.jpg Faces of EI - Meet Elyssia Child with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/dcb8462e-958f-488d-9ec6-5d740c3c1434/3BEF0700-DAAD-4704-A090-0F92A84E73BC_1_201_a.jpeg Faces of EI - Meet Elyssia Child with Epidermolytic Ichthyosis and Plantar-Palmar Keratoderma (PPK) caused by KRT1 genetic variant https://www.eicureproject.com/faces-of-ei/meet-erna-katrin monthly 0.5 2024-06-21 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/939518ea-bd03-4a16-91e8-48b6e82fc8e5/4216DCA3-9745-4484-AD36-49F2016CE95E.jpeg Faces of EI - Meet Erna Katrin Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. Classic EI cobblestone appearance of scale present on neck, alongside mauserung phenomenon. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/c2432542-303a-4b9a-8431-b80c1f465c84/18D0257E-3608-43FF-99B8-A67369EB609B.jpeg Faces of EI - Meet Erna Katrin Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. Classic EI cobblestone appearance of scale present on hands, alongside mauserung phenomenon. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/d5958e15-67e3-466b-b27d-ad973891ca9c/F0EFC434-4629-4EE5-ADA7-4C2884FD1AA4.jpeg Faces of EI - Meet Erna Katrin Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://www.eicureproject.com/faces-of-ei/meet-wyatt monthly 0.5 2024-06-21 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/339db1f0-453a-40c2-8ad9-d706bd6d5ed9/A7CDA28C-DFE0-4039-9C69-24A34FE40E8C.jpeg Faces of EI - Meet Wyatt Two Brothers. One of them is affected with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/a6509009-3ff2-4bfc-b078-faf87ec501a7/A3904443-3A3B-4777-A79C-AACD4C06A6A4.jpeg Faces of EI - Meet Wyatt Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1ddd9d61-ad4a-4a28-a171-70f6d0e78418/06BACFBD-4055-46C7-AB06-73EB6BE4E6AA.jpeg Faces of EI - Meet Wyatt Family with one child affected with Epidermolytic Ichthyosis caused by a KRT10 genetic variation https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/2d2e4945-1fca-4639-aae7-7b47abaf40eb/781E6E96-9CB1-42FB-9A99-350284016673.jpeg Faces of EI - Meet Wyatt Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/a2455dbc-9952-42e4-a9e4-8a925090c6ff/D0D47EC3-ECE9-4870-9EE1-CB9C37BECAEE.jpeg Faces of EI - Meet Wyatt Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1fad7124-031b-4119-bd3f-aee14cff8add/0EBB510C-D8D0-474E-8225-F4F6E253CFB4.jpeg Faces of EI - Meet Wyatt Mother and two sons together. One of the boys is affected with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/6e831ceb-27e4-4e83-a1dc-fa9e7ae7c772/D75A7BF5-01D6-4ADF-966A-C170EA8F24B9.jpeg Faces of EI - Meet Wyatt Two brothers, one is affected with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677936660330-52OWBD9OJWQHZUOR61WW/649A7D5A-A370-441B-94C2-8164151E8E9B.jpg Faces of EI - Meet Wyatt Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. His arm shows areas of denuded skin typical to this diagnosis. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/484321fa-d6b0-4c78-a19a-c7d8145e2292/645C36F4-3019-4940-BCE3-A97D475C0936.jpeg Faces of EI - Meet Wyatt Boy reading a book. He has epidermolytic ichthyosis caused by a KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/9ccd14df-d84e-47b4-b8b5-8123d197786e/94369865-E764-4806-8FA5-799028B4521B.jpeg Faces of EI - Meet Wyatt Two brothers dressed as book-week characters. One brother is affected with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/ea5f1c55-3fc7-410b-a581-af34eec7e5ad/9E92784E-E89B-4D7D-B665-9D7C22504F9A.jpeg Faces of EI - Meet Wyatt Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/cb8b5e90-d968-424b-ac6c-f0c7bbd8ef8c/74EC92A4-EA2C-48FA-AAE4-78A80B0322E4.jpeg Faces of EI - Meet Wyatt Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/d3d94de3-7d4d-4778-ab0e-412ca160c608/06759214-B43B-4628-94A2-8713AC0EA968.jpeg Faces of EI - Meet Wyatt Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/9f82bdde-63e5-40f0-adc5-ab89f0f346e7/468FFCAA-EA8E-430C-8416-3CD51D804C92.jpeg Faces of EI - Meet Wyatt Two brothers. One of them is affected with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://www.eicureproject.com/faces-of-ei/meet-aria monthly 0.5 2024-06-21 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/f6afd93f-6673-4292-be39-ecae1371b9d3/2C41934A-9BE7-49C8-906A-E38C8AA60602.jpeg Faces of EI - Meet Aria A child with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677938866064-5PRZOS6AXEHHAKT5COPR/CDD5E4B3-4DD6-4682-A45A-FA09CF6F1405.jpg Faces of EI - Meet Aria A child with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/4b3d26fa-f4e0-4513-a36c-9bd9fd64bb34/D1EEE313-B63C-42B5-B9C1-E2226C7AB925.jpeg Faces of EI - Meet Aria A family with a little girl affected with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677938758203-NYJVXM3ZLTS4VYM29VHN/FD88BDFE-6FE6-4022-8AC0-BAF2C166405C.jpg Faces of EI - Meet Aria A child with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677939133034-YXTL9QY9TVZTPRNOXEAB/69C2F007-F9EA-4023-86C5-A3D0AD42AD10.jpg Faces of EI - Meet Aria A child's hand showing Plantar-Palmar Keratoderma associated with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/49c9222e-c7ad-4369-8d43-0dbe8fd3a6f4/09029210-835A-49B1-90A5-5C0FEEA64589.jpeg Faces of EI - Meet Aria A childs hands' with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677938657556-W7YWGNWSURO7Z9A4SPXV/AAD6C273-6DAC-487D-8C47-B7CD4AE4F860.jpg Faces of EI - Meet Aria A child with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/5466b464-290d-4ba0-8821-8815c9286020/A2786464-F227-4A7E-9B89-E8E335DF5FDF.jpeg Faces of EI - Meet Aria A child with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677938691257-SRKOYETBE87F2V3FT089/11C1B8B8-D78D-4BFA-B444-7CF06414A2B4.jpg Faces of EI - Meet Aria A child with Epidermolytic Ichthyosis and Plantar-Palmar Keratoderma (PPK) caused by KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/ae680d6e-c9d5-4651-a76c-4a106a7ec050/8276952C-E655-4C91-A8DF-1F4342A494CE.jpeg Faces of EI - Meet Aria A child with Epidermolytic Ichthyosis caused by KRT1 genetic variant https://www.eicureproject.com/faces-of-ei/meet-reggie monthly 0.5 2024-06-21 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677944545246-81UGAF51VAF1D4AZ8TEX/0A5B49AA-0034-4A38-879B-8C6C7238F434.jpg Faces of EI - Meet Reggie A newborn baby with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/4e89c98a-7c67-4d3e-ae57-62aa04ef4c5a/976844C9-A5E8-46CB-AD5F-133431E3F576.jpeg Faces of EI - Meet Reggie A newborn baby and Father with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677944715029-YIUU6GSLHYBPQUCDODDL/F19D5830-09C5-41E4-8A54-31946282FE3D.jpg Faces of EI - Meet Reggie A newborn baby with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/87616255-5ba2-490b-873a-5a41343db2cf/B9749BCE-54C1-4600-AA32-C1496FAE8EB1.jpeg Faces of EI - Meet Reggie A newborn baby with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677944880888-BMPYX5OSER7GLVA9QQCE/C63137CE-F4FC-4316-8EEE-30B88BA3D557.jpg Faces of EI - Meet Reggie Wounds on the legs of a newborn baby with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677945101413-JW4CHRG58UCPFHD4Y5FI/3BF35EA7-2857-407E-807A-BE4D2F97A473.jpg Faces of EI - Meet Reggie A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/4222e9d0-7d47-4ae5-a080-2367e902e068/7905C018-977A-463C-B98E-7E9CAB51F2FC.jpeg Faces of EI - Meet Reggie A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/d81ee3fe-4047-48bf-ba3d-7863c1377fc4/5790D019-C96D-4C23-AD94-23842B928989.jpeg Faces of EI - Meet Reggie A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1677945017871-1U9MPD600NCE35LSQCWQ/12D557C7-6071-4575-8B99-2F5807C7D42D.jpg Faces of EI - Meet Reggie A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://www.eicureproject.com/faces-of-ei/meet-paetynn monthly 0.5 2024-06-21 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678001300499-C3XRZ8GICBCVCKGIFZ44/A5881C3A-552F-4398-B830-5BC6596487AB.jpg Faces of EI - Meet Paetynn A family with one child who is affected with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678001266343-7B2THQEME2ZG9CVLA4SN/8DDB4E5A-1E79-467B-BC8F-749183D7864C.jpg Faces of EI - Meet Paetynn A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678001319881-SNCASHEZY1REDAUTBEU3/3A417516-FEA4-44D2-BDC9-1BEFF5B1AD6E.jpg Faces of EI - Meet Paetynn A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. Hyperkeratisis can be seen on her neck. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678001246944-DPQ0TEWENTA57ALLSN9N/7E824B6A-8B0F-4404-81FD-838C00466715.jpg Faces of EI - Meet Paetynn A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. She has bandages on her legs to cover her wounds. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678001212109-J6E1PEX3F9OW3MXNXOHV/B9AAFE45-9476-434B-B3B0-78246A7CE6F4.jpg Faces of EI - Meet Paetynn A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. Thick skin is peeling from her toes https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/38ba14eb-6849-4d71-98a6-5ef297ef5278/B690CA2B-59DA-4213-963C-53584DFBE24A.jpeg Faces of EI - Meet Paetynn A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. Hyperkeratosis can be seen on the joints and flexures. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/6763d9c1-d441-497e-a619-9b2541e922f5/C348084D-C313-4865-8DAE-F430DA07DA58.jpeg Faces of EI - Meet Paetynn A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/0e277f32-2ad3-41c7-b1ba-b0e27cee2aa2/7BDE0AC2-6ACA-47DF-A45C-014396DB4438.jpeg Faces of EI - Meet Paetynn A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. Hyperkeratosis can be seen on her hands. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678001189057-7X973FRUZT53KW4IHVTE/FF68CB51-3FEB-4BEC-9058-626D79770F81.jpg Faces of EI - Meet Paetynn A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. Hyperkeratosis and Mauserung phenomenon can be seen on her feet. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678001450080-IYC7XPZ3ZMDBEKA2RGDD/82032698-2851-4741-B16C-C21D33EB7600.jpg Faces of EI - Meet Paetynn A child with Epidermolytic Ichthyosis caused by KRT10 genetic variant https://www.eicureproject.com/faces-of-ei/meet-louie monthly 0.5 2024-06-21 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/f1742f16-e569-4a35-a36d-6e578bc7593c/9ECC1F3E-48CA-433A-AD25-D0361451C27D.jpeg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678038288387-XLWPZWUPMWHT5OXUEJFL/E2D765C2-20F9-493A-AD0A-42CD85AECA06.jpg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678038313763-K33060XVTNR34CCRVCOI/9DE498F5-996A-462C-9184-23C367829ABC.jpg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678031598876-G9VR3WX3NWN1LA1FMQIY/3EB00F38-EAA7-4539-A227-949B7AAB5BD4.jpg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/8767b4da-1c67-4796-95a5-2f6b0b649762/750E839F-13A1-4F04-8F72-3A887DB34897.jpeg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/f1e39df8-c322-44e2-93fd-c5834f11dfad/8DDFEAB0-4D14-4A0B-8060-98C16B196696.jpeg Faces of EI - Meet Louie A family of mother and twin boys. One twin is affected with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/96679f5d-75b9-4b34-8990-306fa0ae685e/73EAD5FB-DCAA-48EA-ABD7-81D3385DC63D.jpeg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678032088394-YY7XZXKFW4YA23PN3GBW/418CFA2D-7E8D-407A-ADF2-EE2D0E8EF1A0.jpg Faces of EI - Meet Louie A baby with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1afbd79e-cb97-4c02-bddd-4dfd3dc7cc25/5FA65CDE-C5F6-4D40-A1CC-C2CB771A7A6C.jpeg Faces of EI - Meet Louie Twin Boys. One twin has Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678031772330-395NRTTH22R1A3ZIF09D/39B5438E-6F89-4369-AE06-6296A7491EAE.jpg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678038090806-AME2MFTNOPXPB4WO6YK2/30D60753-1718-4F3D-B286-C8F358DE2F4D.jpg Faces of EI - Meet Louie A family of a child affected with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678038429025-5ZXX7IVSX0LN8E4X8USC/455A8E22-059F-4B21-A16C-DD7B5D9342D8.jpg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis and Plantar-Palmar Keratoderma (PPK) caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678039122461-4RB39NWKJPCB480J76MQ/E6FEEBE7-1C13-4685-A2CB-051FFCB56F4A.jpg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678032110802-FLLX2VNT10DE9AQLGA1F/6317C1E9-B067-468C-BBB9-D68DB0F30120.jpg Faces of EI - Meet Louie A baby with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678038137260-NCYGT2AOELTRHQ3DLPOH/E1EF2127-11D4-4223-956A-5ECCA154790D.jpg Faces of EI - Meet Louie A family of twin boys. One of the twins is affected with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/dc603204-def3-46f4-bba0-4408c955fedc/916E193A-7A85-458D-BFAC-82DEC4D30FF1.jpeg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678032044968-9VW82CD6YCSPQPBFOEVO/FCAD7027-4D85-458D-BE2C-FF7C63CE31D8.jpg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678031581092-RHU5JT2B78XC1EDXG1D3/6A1B4DAC-AA9D-4F8F-B12F-6A04C5A579E5.jpg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis and Plantar-Palmar Keratoderma (PPK) caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678031868062-MKALW8FBLFBK147QW5U3/DB846A89-578B-453C-A6BE-D49D0F3E9292.jpg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678039066874-PR9T18DR09QLMQKBASMX/FEC08E08-194A-4FDF-A036-1D44A70C2C2C.jpg Faces of EI - Meet Louie Twin boys. The smaller twin is affected with Epidermolytic Ichthyosis caused by a KRT1 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678031845663-2QV185MB0Q10ZSGJQ5K3/825A4B87-134B-45A3-91B9-02BFE6EAB4CF.jpg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis caused by a KRT1 genetic variant having play therapy to help improve gross motor skills https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678039023675-90GPR2PI7RAZ3JUAT61J/F9A0DAB3-59DB-486F-96A7-6726F510AFE9.jpg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678031753390-VMBX5MHRLRZ60WCUIFBJ/155EA4E0-5ADB-4F47-A06A-E1367BB194E7.jpg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678038823750-0MQAEM101JJ2B2UJKGIL/6752E12E-0415-4BA9-BCA3-72F988AC1A21.jpg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1678031932282-0CZQ2682IAM8D53FHPBR/08944DA7-942D-4D99-9D56-D1F0CB441D27.jpg Faces of EI - Meet Louie A child with Epidermolytic Ichthyosis caused by a KRT1 genetic variant https://www.eicureproject.com/faces-of-ei/meet-matthew monthly 0.5 2024-06-21 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/4e74dbf6-5ad5-49b2-a29c-5449c9bf6415/4F8880E3-7E09-4C7F-B2E6-FEE52E987858IMG_2546.jpg Faces of EI - Meet Matthew Newborn baby with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/cdf9df27-f24e-44dc-8a5a-3caa4bffe643/1510AF9F-3DB6-462F-A50F-2AADB53F68D1IMG_0022.jpg Faces of EI - Meet Matthew Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/5c59ba93-94b4-4193-82ec-223eb86a8cab/A1A04296-C8DC-40F0-996E-A0D3E3265C7EIMG_4263.JPG Faces of EI - Meet Matthew Feet of a newborn baby affected with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/03c9908b-ec58-4690-bf42-34f037768404/E03EEAC7-18C8-441F-830A-92F04E5A4D21IMG_2650.jpg Faces of EI - Meet Matthew Baby with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/67566111-635e-49df-aca0-1afe7e1f39a5/DD01C629-6FD5-4F5A-8C93-97A6AFDACAC8Bridget+Pettit+Family+Dec+2016-0028.JPG Faces of EI - Meet Matthew Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/7c220a9c-4d35-4d45-aca6-2ac7b941297a/58042491077__064F5EAC-B37C-4EB0-8FCC-5ED4AECAB139.JPG Faces of EI - Meet Matthew Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1703287907983-V0C5DDGAV4VZLACGKZFM/IMG_2075.jpg Faces of EI - Meet Matthew Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/d74bb90b-52f0-4034-b571-cfc191c53611/IMG_0372.jpg Faces of EI - Meet Matthew Feet of a child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1703287832762-Z8IFDXLASSG9VFDAXZF9/A0D6BB94-6F0F-43A6-90CB-B7559B2FE90F2018-08-19_10-41-19_870%2B%25282018-08-27T02_22_03.255%2529.jpg Faces of EI - Meet Matthew Mother and son. The son is affecfed with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1703287185926-9FOSXBT39P6XKJ68MGBV/IMG_4582.jpg Faces of EI - Meet Matthew Healing blister wounds from a child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1703288129297-TZK084JI52P17EDQUMJP/IMG_3113.jpg Faces of EI - Meet Matthew Brother and Sister. The boy with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1703287770863-TTEJK5DG9187U7BBFJZ7/EEA50DDD-AD2C-4DFC-8D31-D50ADE4AF5C22020-08-11_07-07-30_538.jpg Faces of EI - Meet Matthew Three siblings together. The eldest is affected with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1703287965097-RLGB4U3AESKK0XZFNXF6/IMG_4597.jpg Faces of EI - Meet Matthew Typical wound caused by a trip or fall in association with an Epidermolytic Ichthyosis. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1703287888146-MZGTMY9TSBJ6AJALQCKL/C9095920-8281-46E7-ADCC-70E1B7B6E4942020-06-18_12-50-09_089.jpg Faces of EI - Meet Matthew Child with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1703288079543-C3EMLKTYIE8CG53L59EE/IMG_6399.jpg Faces of EI - Meet Matthew Brother and Sister mani-pedi. One of the children is affected with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://www.eicureproject.com/faces-of-ei/meet-arienne monthly 0.5 2025-07-12 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/9f091f7f-a49d-4e6a-9068-14204f24d217/IMG_0047.JPG Faces of EI - Meet Arienne Newborn baby with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/7ee35fa7-1681-4e40-980a-7663bef52ed9/IMG_0066.JPG Faces of EI - Meet Arienne Happy to be home https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1b44c460-51bf-481d-ab0e-08a77c2064d4/Screenshot+2024-06-22+at+21.49.47.png Faces of EI - Meet Arienne https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/67442eb1-2afa-4ac9-9e7b-46aa67c1b7d8/Screenshot+2024-06-22+at+22.22.41.png Faces of EI - Meet Arienne https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/97e325e6-f2be-436f-80a9-9d2f03db5998/Screenshot+2024-06-22+at+23.09.57.png Faces of EI - Meet Arienne Exfoliation tools https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/76293de5-cb47-4655-92dc-3d0d1910c89b/IMG_0028.JPG Faces of EI - Meet Arienne Post-bath naked time was a great time for 'Tummy time' on a plastic backed sheet laid on the soft bed https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719129300773-P4V0U4R3AMCNDYX9Z5CN/Screenshot%25252B2024-06-23%25252Bat%25252B09.50.28.jpg Faces of EI - Meet Arienne Skinnies WEB garments https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/d3bea7d4-f132-4d36-b9c8-1677a8a4e2b3/Screenshot+2024-06-25+at+02.08.54.png Faces of EI - Meet Arienne 1) Trip or Fall wound https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/0872a504-82a6-4a92-b8cc-723e48bda3a3/IMG_0138.JPG Faces of EI - Meet Arienne Newborn baby with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719090256110-YMOLI7A95R6BB5R8LJUG/IMG_0035.jpg Faces of EI - Meet Arienne Simple cotton sleep suits and a soft surface to sleep on are a good combo https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719089147211-C8FW98NBD45JO364OPEQ/Screenshot%252B2024-06-22%252Bat%252B22.22.59.jpg Faces of EI - Meet Arienne https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719092813742-C6SGI9GIAJGT4H8KGEP3/Screenshot%2B2024-06-22%2Bat%2B23.43.43.jpg Faces of EI - Meet Arienne Classic EI water-blisters caused by finger-point pressure https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719100379124-TA7GL1KKT6SXIW9VA5IT/Screenshot%252B2024-06-23%252Bat%252B01.50.49.jpg Faces of EI - Meet Arienne https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/e06264ab-c9f9-4e95-a0a0-88423ee1aa62/Screenshot+2024-06-22+at+23.09.36.png Faces of EI - Meet Arienne Wound Care Tools https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719275057937-AG1992XP2V8EQE1WOL5R/Screenshot%2B2024-06-25%2Bat%2B02.23.08.jpg Faces of EI - Meet Arienne 2) Blisters caused by Allergy or Local Reaction https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/cfe27f71-e66d-4cc1-b6f5-b54875eb2f36/IMG_0154.JPG Faces of EI - Meet Arienne Mum and baby in the NICU. The newborn baby is affected with Epidermolytic Ichthyosis caused by KRT10 genetic variant. https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/53bbeec9-0dd7-4400-b904-df58c745e368/IMG_0153.JPG Faces of EI - Meet Arienne Post-bath naked time is very helpful for wound healing in the diaper zone https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719088692262-7SAJ8FX1TPWB0JKQ14NL/Screenshot%2B2024-06-22%2Bat%2B22.16.40.jpg Faces of EI - Meet Arienne https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719092781933-3SHBA5GSHICEIG5UNSTF/Screenshot%2B2024-06-22%2Bat%2B23.44.13.jpg Faces of EI - Meet Arienne Early newborn inflamed skin https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719274402892-TWR316282W862HFQQP6I/Screenshot%2B2024-06-25%2Bat%2B02.09.42.jpg Faces of EI - Meet Arienne 3) Blisters and Erythema caused by Friction/Heat https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719331180909-7EV2SONJBBRE2M91RWQM/Untitled%2Bdesign.jpg Faces of EI - Meet Arienne Moisturisers https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/19b0a2ca-b447-43c3-a787-f80f443ec94a/IMG_0204.JPG Faces of EI - Meet Arienne Bathing flat in a baby bath tub to ensure scalp and neck get the benefit of bathing https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/16d25a5c-2644-41ff-8c8a-f6301869026e/Screenshot+2024-06-22+at+22.16.18.png Faces of EI - Meet Arienne https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719093833670-NUJZUDPTPUGX6DJCJB8C/IMG_3176.jpg Faces of EI - Meet Arienne Early scale development around 3 to 4 months shown on inner arm https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719274431820-HWY1IHXGDJ8HER93IPON/Screenshot%2B2024-06-25%2Bat%2B02.10.13.jpg Faces of EI - Meet Arienne 4a) Pus and yellow crusting denotes Bacterial skin infection https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/391d095f-d56d-440e-b37f-08e8e7a2d15a/IMG_0028.JPG Faces of EI - Meet Arienne Lots of naked time is good in the first year https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/debbf996-3254-4d8a-afd1-4b8900f144d9/Screenshot+2024-06-22+at+22.26.50.png Faces of EI - Meet Arienne https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719093612084-XSDCWTW86O2VSNZHZ1HL/Screenshot%2B2024-06-22%2Bat%2B23.55.26.jpg Faces of EI - Meet Arienne Blisters caused by normal ankle lift for a diaper change, we changed to lie her onto a prepared diaper instead https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719312285749-A7518TTB2LYMD4UV43O0/Screenshot%252B2024-06-23%252Bat%252B00.09.58.jpg Faces of EI - Meet Arienne 4b) Small red dots and shiny red skin denotes Fungal skin infection https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/c58d424c-9253-4ef3-8e9d-6ac7a77035d0/IMG_0030.JPG Faces of EI - Meet Arienne Padded high chair (Straps removed) reduced friction wounds on hips, bottom, and thighs https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719088573801-6RAP1OROHU6X5Z1TEZ5R/Screenshot%2B2024-06-22%2Bat%2B22.27.04.jpg Faces of EI - Meet Arienne https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719093569045-0IFFQM1RRGJ9R0FUTENU/Screenshot%2B2024-06-22%2Bat%2B23.57.22.jpg Faces of EI - Meet Arienne Early scale development around 3 to 4 months shown on knee and leg https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719090030055-8N9DKNNNYAYGVVPBEYIV/IMG_0088.jpg Faces of EI - Meet Arienne Legs always covered with thin layer of clothing to prevent book corners causing wounds https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/4b2607ac-2e35-4dbd-837e-40863862e8f4/Screenshot+2024-06-22+at+22.17.19.png Faces of EI - Meet Arienne https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719093933824-4O8L5W16E2MEP9VYTTBT/Screenshot%2B2024-06-22%2Bat%2B23.58.44.jpg Faces of EI - Meet Arienne Typical scale and redness on thigh due to heat https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/bc40de27-d53f-4a7d-9372-37d45ba8a5bd/IMG_0258.jpg Faces of EI - Meet Arienne Diaper-free onesie time during hot summers https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719089431618-LN0S333LM1LF82ZWRV51/Screenshot%2B2024-06-22%2Bat%2B22.15.53.jpg Faces of EI - Meet Arienne https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719094346476-MT57T3111J61YQCURHDI/Screenshot%2B2024-06-23%2Bat%2B00.09.26.jpg Faces of EI - Meet Arienne Skin trauma due to heat and friction caused by being held by mum on a humid day https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/25d0158d-5f16-4130-a565-5c352b77af31/Screenshot+2024-06-22+at+11.49.10.png Faces of EI - Meet Arienne Portable bath tub (Brand: Gorilla tub) for use in the shower when on holiday https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719098399604-USOKJI879HOC8NI07S46/Screenshot%2B2024-06-23%2Bat%2B00.54.44.jpg Faces of EI - Meet Arienne Scratch wounds following local reaction to mosquito bites on leg https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719094369329-237K26RJVGHM6J644RFT/Screenshot%2B2024-06-23%2Bat%2B00.09.58.jpg Faces of EI - Meet Arienne Fungal infection on hip (Red bumps, skin looks shiny), treated with Imazol and 7-day course of oral Daktarin gel https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719094411865-H6F5YJ9I5VBKU5IOWI6R/Screenshot%2B2024-06-23%2Bat%2B00.10.30.jpg Faces of EI - Meet Arienne Skin loss following heat and friction wound from being held on a humid day. Skin is now healing well, 1 day post-trauma https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/be445ba5-066e-402e-9e67-6470f82c897e/IMG_0110.JPG Faces of EI - Meet Arienne https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/85cb4b99-c4fa-43f6-86df-bec69d97393e/Screenshot+2024-06-22+at+11.55.19.png Faces of EI - Meet Arienne Flying high on her 3rd Birthday! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719096136576-22YCJSQWW5PU4K1ADMTI/Screenshot%2B2024-06-23%2Bat%2B00.37.24.jpg Faces of EI - Meet Arienne Frequent blisters, pus, and yellow crust around wounds denotes bacterial infection requiring treatment https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719096165839-73NWN2R3IXPG00K7HRXW/Screenshot%2B2024-06-23%2Bat%2B00.37.40.jpg Faces of EI - Meet Arienne Typical streptococcus infection denoted by deep red colour, excessive exudate, odour, and fast increase in wound surface area https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/f96021e6-540f-458c-8d11-50b96ec6c1e4/IMG_0516.jpg Faces of EI - Meet Arienne Healing skin following wound debridement and treatment of skin infection with oral antibiotics https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/59dd8129-3f38-4561-8217-93643af50749/IMG_0482.jpg Faces of EI - Meet Arienne Appearance of wound following debridement and treatment for an extensive local reaction to a mosquito bite https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/521d39e8-4b75-4fb9-b980-511536e2de34/IMG_4555.jpg Faces of EI - Meet Arienne Wounds caused by exfoliation attempts when skin was still too fragile https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/e7202d2f-e32e-409c-a52f-febe0a007cbb/Screenshot+2024-06-23+at+00.56.00.png Faces of EI - Meet Arienne Skin dryness and flaking indicates need for a change in care routine. Addition of thicker emollients and use of wet-wrapping technique with Skinnies WEB resolved this https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719098053779-VDSNS6EC6VH0YU1H7FRN/IMG_0019.jpg Faces of EI - Meet Arienne Happy baby once we got the care routine figured out! https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1719100829711-KVAWR83M3UWGXCZYTIYC/IMG_5048.jpg Faces of EI - Meet Arienne Excess dryness and flaking lead to cracks and fissures in the flexures and folds. Additional emollients and wet-wrapping technique with Skinnies WEB resolved this https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/f372f842-ae29-4cbd-9902-9c6d2d9d697a/Screenshot+2024-06-22+at+01.01.50.jpg https://www.eicureproject.com/meet-the-board daily 0.75 2025-03-23 https://www.eicureproject.com/meet-the-board/helen-lill monthly 0.5 2023-12-22 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1684226790786-KIT6ZNJBABND462PFRWN/9A5D0DBA-1D8C-4CF5-81C1-DC7F45808C53.jpg Meet the Board - Helen Lill - Swiss Association https://www.eicureproject.com/meet-the-board/tom-lill monthly 0.5 2023-12-22 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1684260512300-HZCUFL3TCMBS130EIW9X/A70CFC04-6B45-40A1-853F-47EEF7AA66E8.jpg Meet the Board - Tom Lill - Swiss Association https://www.eicureproject.com/meet-the-board/cat-lancashire monthly 0.5 2023-12-22 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1684259993821-QW46ZMEB7CJS2EEIKA73/60D71725-1F53-4852-B744-F72A0A84CD0D.jpg Meet the Board - Cat Lancashire - UK Charity https://www.eicureproject.com/meet-the-board/andrew-sanders monthly 0.5 2023-12-22 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1684260364264-HN8F87M9Z6BYSOH3NQVW/DE82CF7E-766E-4758-BB87-5DD6E5920E8E.jpg Meet the Board - Andrew Sanders - UK Charity https://www.eicureproject.com/meet-the-board/brody-fredericksen monthly 0.5 2023-12-22 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1684260851359-WYKY6DVVHAJIPKRVLWS9/62D6E413-5C3B-4F2D-9387-EF01D7FF2A83.jpg Meet the Board - Brody Fredericksen - US Organisation https://www.eicureproject.com/meet-the-board/liz-slevcove monthly 0.5 2023-12-22 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1684261161157-RB1PNXM5CS1F2I4LIEYU/Liz%2BSlevcove%2B%25281%2529.jpg Meet the Board - Liz Slevcove - US Organisation https://www.eicureproject.com/meet-the-board/bridget-pettitt monthly 0.5 2023-12-22 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1684262314850-ZSAJ80RZEXF295L6OME2/Bridget%252BPettitt.jpg Meet the Board - Bridget Pettitt - US Organisation https://www.eicureproject.com/meet-the-board/nick-walker monthly 0.5 2023-12-22 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1684261855986-1OGCEXVD0JBHRM1QJ9UE/6715E9FF-6AEB-41C2-B84E-DD49D97155F0.jpg Meet the Board - Nick Walker - US Organisation https://www.eicureproject.com/meet-the-board/michelle-hill monthly 0.5 2023-12-22 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1684262181904-OQK65TPVX4WF5ZW0W319/MichelleHill.jpg Meet the Board - Michelle Hill - US Organisation https://www.eicureproject.com/meet-the-board/rhiannon-morgan monthly 0.5 2023-12-22 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1684525769723-YAF4V5DL1PYIP2JBCUBB/image1.jpg Meet the Board - Rhiannon Morgan - UK Charity https://www.eicureproject.com/meet-the-board/hannah-lark monthly 0.5 2023-12-22 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1684595567967-PCR5JRNRIX53Q214SCQP/Hannah%2BLark.jpg Meet the Board - Hannah Lark - UK Charity https://www.eicureproject.com/meet-the-board/rachel-wagner monthly 0.5 2023-12-22 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1700167715330-VW6CL1IQNZML3838PB6W/Rachel%2BWagner_Board%2Bpicture.jpg Meet the Board - Rachel Wagner - Canadian Charity https://www.eicureproject.com/meet-the-board/jordan-arndt monthly 0.5 2023-12-22 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1700168670568-G2WKWJETKNR088W0G1SM/Jordan%2BArndt_Board%2Bphoto.jpg Meet the Board - Jordan Arndt - Canadian Charity https://www.eicureproject.com/meet-the-global-ambassadors daily 0.75 2025-03-23 https://www.eicureproject.com/meet-the-global-ambassadors/taiwan monthly 0.5 2024-11-21 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/85805450-eb4a-4552-b8a0-cba487c284b4/Louie+Wei_Taiwan.jpg Meet the Global Ambassadors - Taiwan https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1685808538116-2525U12XIIJLX9FL49X8/8DDFEAB0-4D14-4A0B-8060-98C16B196696.jpg Meet the Global Ambassadors - Taiwan https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/d3889cc1-a3d5-4086-b8f0-7df7b9d97210/08944DA7-942D-4D99-9D56-D1F0CB441D27.jpg Meet the Global Ambassadors - Taiwan https://www.eicureproject.com/meet-the-global-ambassadors/greece monthly 0.5 2024-11-21 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1685822432224-V0EQ13X9MITCEQM0QIUC/Screenshot%252B2023-06-03%252Bat%252B21.58.28.jpg Meet the Global Ambassadors - Greece https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1685822245725-MWZU8QBYJRKNY6CNOJRJ/Screenshot%252B2023-06-03%252Bat%252B21.53.49.jpg Meet the Global Ambassadors - Greece https://www.eicureproject.com/meet-the-global-ambassadors/zimbabwe monthly 0.5 2024-11-21 https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1685823217254-ZNHE11TM4CB53R5E4CXS/Tracy%2BRuduvo_Zimbabwe.jpg Meet the Global Ambassadors - Zimbabwe https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1685823236437-OEWZYS86AHP8VBZSE47L/Tracy%252BRuduvo%252B3_Zimbabwe.jpg Meet the Global Ambassadors - Zimbabwe https://images.squarespace-cdn.com/content/v1/63ee26f9c0c10223fa08f41d/1685823255546-C9SY26M39RDL22H7GUKF/Tracey%2BRudovo%2B2_Zimbabwe.jpg Meet the Global Ambassadors - Zimbabwe https://www.eicureproject.com/meet-the-global-ambassadors/state-of-palestine monthly 0.5 2024-11-21 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