Support SDSUK during February and March and help bring people affected by SDS and other rare conditions together.

Last year 83 people affected by rare bone marrow conditions joined in with Super Rare! Will you join them in 2026?

Having a rare condition such as SDS can be lonely and people affected by it often feel isolated.

By joining in with Super Rare you have the opportunity to change that feeling of loneliness and isolation and meet other people with rare bone marrow conditions.

Super Rare, our annual fundraising campaign, brings people together who live with a rare condition, such as SDS. It provides opportunities to meet other people who know what it’s like and understand.

All money raised in February and March will go towards the SDSUK annual family day, where we bring families affected by SDS together to form connections, support and friendship.

Raise £200 for SDSUK during February and March and we'll send you a t-shirt so you can show everyone what a Super Rare Super Hero you are!

By organising a walk with a few friends, you could ensure that someone living with a rare condition gets the opportunity to meet other people at a coffee morning, by holding a bake sale you could build friendships at our family day.

Super Rare is our opportunity to step up, reach out and connect with each other. We’ll be organising various walks and events and we would love to see some of you there! Whether you’re living with SDS, or fundraising for one of the other rare conditions joining the campaign this year, it’s a wonderful opportunity to meet each other and share our experiences.

Join in with Super Rare our annual fundraising campaign and celebrate Rare Disease Day (28th February).