Fundraise for PNH Support during February and March and help bring people affected by PNH together during our 10 year anniversary year.

Super Rare is about strength in numbers. Where those living with rare and ultra rare bone marrow failure conditions join together for the benefit for all our communities which separately are very small but together are stronger and louder!

The money you fundraise will help us to keep supporting those with PNH and their families including providing them with information, advocating on their behalf and making sure no one feels alone.

Having a rare condition can feel lonely. 27% of people with rare bone marrow conditions, told us they ‘often’ or ’always’ feel lonely.

Your fundraising, could pay for us to hold a patient and family day, host more face-to face meetings and put in place long term emotional wellbeing support services for our community. You could also help us gather data needed to evidence that new treatments being developed to address the symptoms of PNH are worthwhile and improve patients’ (and also their families) lives.

Raise £200 we’ll send you a Super Rare t-shirt. How will you earn yours?

Join Maria on a Super Rare Walk through Epping Forest on the 1st March. For more details see the PNH Support website.