Story

A 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.