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!
Story
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 Super-rare.org to request a fundraising pack and learn more.
