Our campaign is now complete. 45 supporters helped us raise £775.00
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Organised by DCActionBe 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.
Closed 15/04/2024
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.
Visit Super-rare.org to request a fundraising pack and learn more.
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