EI Cure Project Founder invited to join a world-class panel
EI Cure Project Founder, Helen Lill, was honoured to be invited by the orgniser of WCRSD (Prof. Christine Bodemer) to join a number of renowned dermatology experts in a debate surrounding the new Epidermal Differentiation Disorders classification.
If you’d like to watch Helen’s part of the debate, where she presents the patient and parent perspective on the new EDD classification for EI, please watch the short video below.
EI Cure Project research presented
Dr Wei Wang, a Postdoctoral researcher from the University of Freiberg in Germany, presented the findings from an EI Cure-funded project from our 2024 grant awards. if you’d like to know more about the research project and their findings, please visit '“Our Research” pages, and select the project led by Professor Cristina Has.
The main conclusion from Dr Wangs presentation is that keratinocyte stress is a key driver for EI symptoms of blistering, fragility, hyperkeratosis, and inflammation, and that new therapeutic targets for EI should explore medications to reduce keratinocyte stress.
The conclusion of the Freiberg research team nicely brings us onto one of the other major benefits of WCRSD, and that is being able to meet and form new alliances with like-minded individuals at the congress. One of the many people that Helen was able to meet with during WCRSD includes Karen McGuire, the Founder and CEO of Biomendics, who are currently running a Phase 2 clinical trial (TAMES-2) for EB Simplex using a new small molecule topical gel (TolaSure), specifically designed to reduce keratinocyte stress.
Helen and Karen talked about the huge potential for EI to benefit from TolaSure, and started to put together a plan for a Phase 2 Clinical Trial. A clinical trial for EI is already in the Biomendics Pipeline, but first we need to gain further results from the TAMES-2 EB Simplex Trial.
If you’d like to learn more about TolaSure Gel by Biomendics, please watch this short interview with CEO Karen McGuire.
Networking and Exploring Future Research for EI
WCRSD is the only event that focuses on rare skin diseases. It’s like a hotbed of expertise and understanding of all the work needed to achieve a shared vision of a future with effective treatments for our rare communities.
This event is big enough to help raise awareness of a single rare disease in the sea of many, but it’s also small enough to facilitate one-to-one conversations that lead to impactful change.
In the pictures above, you can see EI Cure Project Founder Helen Lill with other patient advocates, dermatologists, researchers, geneticists, and biotech representatives all sharing the same stage - as equals and as ambassadors for a shared vision.
Helen Lill said about the event:
“WCRSD is an event organised by experts who reward hard work and help support and nurture this rare skin community - they somehow manage to see us all. The one-to-one moments that events like this manage to facilitate, are so important to help us make plans for the future, and I already have lots of potential leads that are very promising for our EI Community thanks to all these wonderful and brilliant people. I genuinely love this event, and the smiles you see in these pictures are very real!”
Huge thanks and congratulations to Professor Christine Bodemer, Rene-Touraine Foundation, and ERN-Skin for another super congress. We can’t wait to see where EI Cure Project research will be heading for the next WCRSD in 2028!