Super Rare 2024 for CAN

Be there for people living with a congenital anaemia 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 127 supporters
Closes on 17/07/2024
RCN 1176864

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Our recent report into the experiences and needs of people affected by congenital anaemias 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.

How we're planning to help people affected by congenital anameia 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 1176864
We are a group of patients, carers, doctors, and scientists who are all interested in patients with rare inherited anaemia. We want patients with rare inherited anaemias to be able to meet each other (virtually or in reality) and help and support each other. We want to give out reliable information about rare inherited anaemias and get your questions answered by doctors in the field. We want to raise money to fund research so we can better understand these conditions and improve the diagnosis and treatments available. We’re keen

Donation summary

Total raised
+ £610.75 Gift Aid
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