Thanks to all who have raised funds for DCAction

We’ve created a fundraising pack containing ideas and advice to help you raise funds and support people affected by Dyskeratosis Congenita and Telomere Biology Disorders.

Email us at and we’ll send the pack to you.

However you are fundraising we hope you have a great time doing it 🙂

Welcome to Super Rare!  

1 Feb – 31 March 2024 

Did you know that people living with Rare Diseases are over four times more likely to be lonely than the general population? 

Super Rare is our chance to connect with people who have had similar experiences, raise money for DCAction, and spread the word about our Super Rare conditions and how they impact our lives. 

So sign up for an event, organise one, or order your fundraising pack now to start planning how you can get involved during February and March and earn your t-shirt! 

Order your fundraising pack: