Super Rare 2024 for SDS UK

Be there for people living with SDS 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 84 supporters
Closes on 02/07/2024
RCN 1164269

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Our recent report into the experiences and needs of people affected by SDS 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 bone marrow conditions that they may be SUPER RARE but they are not alone.

Lauren talks about the challenges of learning how to care for her son after his bone marrow transplant.

How we're planning to help people affected by SDS 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 to request a fundraising pack and learn more.

About the charity


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RCN 1164269
Provide access to health and educational services and resources. Forums to support our community. Develop an adult clinic with transition from paediatric to adult care. Research into the pathophysiology of SDS & treatments. A dedicated UK Patient Registry & fundraising to meet charity objectives.

Donation summary

Total raised
+ £307.00 Gift Aid
Online donations
Offline donations
Direct donations
Donations via fundraisers

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