LATEST NEWS!

May 2025

Ichthyosis Awareness Month Is Here!

Please show your support and help us raise awareness of Epidermolytic Ichthoysis TODAY!

The EI Cure Project is running TWO campaigns this year!

1. Reps for Rare Dance Challenge - A fun global challenge to share with your friends;

2. EI Highs & Lows - Real life stories to get us thinking.

1) Reps for Rare Dance Challenge

The Reps For Rare Dance Challenge is very simple:

• Every person who does the 3-minute dance routine contributes 150 reps;

• We need enough people to do the challenge to get to 300,000 reps;

• This number represents how rare people with Epidermolytic Ichthyosis are (1 in 300,000 people are affected).

It’s really very easy to join our mission to raise awareness of EI and the great work of the EI Cure Project.

All you need to do is find a group of willing people, find a location with a screen and speakers, use the instructional video to play the music and show you the moves, and finally, have lots of FUN!!!

The only other step is to ask someone to take a 1-minute video to share with us by email, and to tell us a little about your event, so that we can tell you some fun statistics about the challenge, and so we can make another awesome compilation video.

Please see last years video below for inspiration! You’ll see we had everything from families in their living rooms, work colleagues having fun in their lunch break, to big events held in sports centres and schools.

Whoever you want to have a laugh with, get planning now, and join the fun! We promise you won’t regret it!

2) EI Highs and Lows - share your stories

Ichthyosis Awareness Month is all about YOU!

That’s right, we want to learn about the ‘lived experience’ of our community, the highs and the lows.

By sharing our stories we can achieve three major things:

• Help others to better understand the challenges of living with EI;

• Offer hope to new families by sharing the positive aspects of life with EI;

• Motivate healthcare professionals, researchers, doctors, and scientists to help us too!

If you’d like to get involved, please follow the link to share your story with us TODAY!

What you share with us will be used to create stories for our online social media campaign. You can choose to remain anonymous, or share your identity. The choice is entirely yours.

If you feel inspired, please don’t delay, and join our IAM2025 Campaign TODAY!