Reach for the sky, find a cure for EI!

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At the EI Cure Project, we offer expertise, day-to-day support, and fund research to find better treatments for all those affected with Epidermolytic Ichthyosis (EI).

LATEST NEWS!

February 2026

Rare Disease Awareness Month

The Reps for Rare Dance Challenge is BACK!!

The Reps For Rare Dance Challenge was created in 2024 by Founder Helen Lill as a super fun way to raise global awareness of Epidermolytic Ichthyosis (EI). Every person who follows the dance routine contributes 150 reps towards the 300,000 total, chosen to represent the rare prevalence of EI which affects 1 in 300,000 people born worldwide.

It’s so easy to get involved, and there’s even an instructional video to help you, you only need a screen and volume control to get you started. Do it yourself at home, invite a group of friends to join you, or do it as a warm-up for your school PE classes. We’ve had office workers do the challenge in their lunch hour, whole school assemblies, karate clubs, garden parties, you name it, there’s no end to the list of people who can be convinced to dance together for a good cause.

So please, get your thinking hat on, and find some fellow friends to join the fun.

Just send us an email to eicureproject@gmail.com when you’re done so we know how many reps to add to our total.

LET’S GO,

JUMP UP AND DANCE WITH ME!

Don’t forget…

EI Global Symposium - Registration OPEN

We are truly delighted to announce the very first EI Global Symposium will take place at the Zurich Careum in Switzerland on March 19th 2026.

To learn more about the event, and to see the program in more detail, please click on the “EI Global Symposium” button below:

EI Global Symposium

We are excited to welcome you to this exciting event that brings together patient and parent advocates, healthcare professionals, doctors, researchers, and scientists.

For the very first time, the spotlight is dedicated entirely to Epidermolytic Ichthyosis (EI), and we simply cannot wait!

Register Now
What is EI?
Living with EI

Learn more about the EI cure project

About the project
Faces of EI
Meet the Founder
Meet the Board of Directors
EI Resources
Meet the Researchers
Meet the Global Ambassadors
Project Updates

Fundraising Targets

Latest update on 4th December 2025

We are now fundraising for new and exciting projects that are ready and waiting to start.

So please continue to support us…

We’ve come so far, we just have to keep going!

While you are here, please consider making a donation to fund important research

Thank you

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