Support DC Action during February and March and help bring people affected by Dyskeratosis Congenita 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 DC 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 Dyskeratosis Congenita. 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 DC Action Quarterly meetings, which bring people affected by DC together online. It will also provide funds for our TeloNet meetings, a networking meeting for clinicians and physicians from various disciplines, that you will help facilitate clinical knowledge and build expertise of Telomere Biology Disorders.

Raise £200 for DC Action 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 or Afternoon Tea you could build expertise of Telomere Biology Disorders amongst clinicians.

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 DC 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).