LATEST NEWS!

19th March 2025

Ichthyosis Awareness Month Is Coming…

Please show your support in May and start planning your Reps For Rare Dance Challenge event TODAY!

The Reps For Rare 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!