I am rare. I am registered.

Rare Disease Day 2022 will be held on February 28th. At Reverse Rett, this Rare Disease Day, we are focusing our efforts on stressing how important it is that everyone with Rett Syndrome in the UK, is registered on the Rett Registry UK.

We are doing a lot of work to advocate for clinical trials and new treatments to come to the UK, but, we need to have accurate and up to date information about how many people in the UK have Rett Syndrome and updated information on their status. 

When we are doing this work, we can only count your child, young person or adult with Rett Syndrome in, if they are registered on the Rett Registry UK.

We need to show industry partners, regulators and payers in the UK and beyond that everyone with Rett Syndrome in the UK counts and each and every one matters. 

Help us, by ensuring that you’re registered and by sharing your own, ‘I am rare. I am registered,’ post on social media on February 28th 2022.

Ahead of the big day, you can also help us develop infographics to use around Rare Disease Day to help promote the ‘I am rare. I am registered,’ campaign. 

Simply send us an image of your child, adult or young person with Rett or MECP2 Duplication Syndrome to share on our website and social media channels, along with anything you’d like to share with us about the person and or how they are living their life.

Thank you!

#RareDiseaseDay #RettRegistryUK