PNH Support

Super Rare 2024 for PNH Support

Be there for people living with PNH 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 92 supporters
Closes on 17/06/2024
RCN 1161518

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Our recent report into the experiences and needs of people affected by PNH 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 have shrunk my world to family and mainly two friends, I am fearful of going out, and I don’t talk about my illness much to anyone.” - Survey respondent

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.

Here Jovita talks about how being diagnosed with PNH impacted her life.

How we're planning to help people affected by PNH 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

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
+ £326.74 Gift Aid
Online donations
Offline donations
Direct donations
Donations via fundraisers

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