Fanconi Hope

Super Rare 2024 for Fanconi Hope

Be there for people living with fanconi 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!
£1,983
raised
by 2 supporters
Closes on 14/07/2024
RCN 1126894

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Story

Our recent report into the experiences and needs of people affected by fanconi anaemia 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 Fanconi Hope are planning to help people affected by fanconi anaemia 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

Fanconi Hope

Verified by JustGiving

RCN 1126894
Fanconi Hope is a charity set up to sponsor research and support those affected by the rare genetic disorder Fanconi Anaemia that affects children and adults, leading to bone marrow failure and bone marrow transplantation, with very high risk of leukaemia and head and neck cancers.

Donation summary

Total raised
£1,983.00
+ £236.00 Gift Aid
Online donations
£944.00
Offline donations
£1,039.00
Direct donations
£944.00
Donations via fundraisers
£0.00

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