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Our campaign is now complete. 45 supporters helped us raise £775.00

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Closed 15/04/2024

Super Rare 2024 for DC Action

Be there for people living with dyskeratosis congenita and join our annual Super Rare campaign! You’ll help us deliver expert emotional and practical support and information - and earn yourself an exclusive Super Rare tee.
by 45 supporters
Donations cannot currently be made to this page
Closed on 15/04/2024
RCN 1167150

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The campaign has now expired but it's not too late to support this charity.

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Our recent report into the experiences and needs of people affected by dyskeratosis congenita or a similar or related rare condition found that;

53% of respondents reported always or often feeling anxious

64% reported some degree of loneliness

More than a fifth do not feel confident navigating the healthcare system

65% would like information how to get insurance cover

18% were unable to access the benefit system despite wanting to

‘I had to battle and plead in desperation to get psychological support for my son. This was one of the biggest challenges i went through. Support for patients and families in gaining access to psychological support would be invaluable”

By fundraising in February and March as part of SUPER RARE 2024 you are showing people affected by dyskeratosis congenita that they may be SUPER RARE but they are not alone.

Jovita talks about how being diagnosed with a rare condition impacted her life.

How we're planning to help people affected by dyskeratosis congenita this year:

Provide expert emotional well-being support, designed and delivered by qualified psychologists

Help members of our community to access benefits and insurance

Publish new up-to-date information resources to help people understand the condition, current research and treatment

Facilitate improved opportunities for peer-to-peer support

Raise awareness and help you to explain the condition to clinicians, teachers, employers, and the public.

Fundraise over £200 and we’ll send you a t-shirt.

Visit Super-rare.org to request a fundraising pack and learn more.

About the charity


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RCN 1167150
DCAction supports people living with Telomere Biology Disorders across three main areas: Advocacy - a focus on research and improved access to expert care and treatments Education - to raise awareness of Telomere Biology Disorders amongst medical professionals, patients and the public Support - to provide support and advice for people and families living with Telomere Biology Disorders

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