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Our campaign is now complete. 68 supporters helped us raise £1,558.00

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Closed 19/12/2023
PNH Support

Super Rare 2023 for PNH Support

Super Rare is a campaign where we are asking people to fundraise to help people affected by rare bone marrow conditions. The theme for 2023 is Stronger Together - because seven small charities are coming together to join the campaign
£1,558
raised
Donations cannot currently be made to this page
Closed on 19/12/2023
RCN 1161518

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Story

The Super Rare Campaign is a fundraising campaign throughout February and March 2023 where we are asking people to fundraise to help people affected by rare bone marrow conditions.The theme for 2023 is Stronger Together - because for the first time, seven small charities are coming together to join the campaign, to help anyone diagnosed with a super rare bone marrow condition. The seven small but mighty organisations in this partnership are: The Aplastic Anaemia Trust, CAN (Congenital Anaemia Network), DBA UK, DC Action, Fanconi Hope, PNH Support and SDS UK. Be creative, be daring, or just be silly with your fundraising. Set yourself a challenge to complete in February and March 2023 to raise money and awareness for your chosen charity. Raise £200 before the end of March and receive a Super Rare T-shirt.

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About the charity

PNH Support

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RCN 1161518
We support patients living with Paroxysmal nocturnal haemoglobinuria (PNH) and their families in England, Wales and Northern Ireland . Our vision is "No PNH patient in England, Wales and Northern Ireland is alone. All are represented and enabled to live to their full potential with PNHi". s an ultra-rare bone marrow failure disease. Our mission is "We provide support through educational resources and advocacy, as well as peer to peer contact." PNH is acquired (which means it is not inherited) and affects 1.3 people per million. Those living with this condition can require life long treatment to address symptoms such as extreme fatigue, breathlessness, pain and sometimes complications such as blood clots and kidney damage.

Donation summary

Total raised
£1,558.00
+ £227.50 Gift Aid
Online donations
£1,558.00
Offline donations
£0.00
Direct donations
£10.00
Donations via fundraisers
£1,548.00

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