Welcome to Super Rare! 1 February – 31 March 2024 Did you know that people living with PNH or other rare conditions, are over four times more likely to be […]
We are pleased to launch Rare Voices, a national report based on the first ever national community survey into rare bone marrow conditions including PNH. Read more about the findings, our […]
Happy Small Charity Week! Why not support our small charity which is run by patient volunteers? By donating as little as £2 a month you are: 1. Making a lasting […]
On Rare Disease Day 2023, the Lancet Haematology journal published a patient voice piece written by Maria Piggin, Chair of PNH Support and PNH Global Alliance entitled “Nothing about us […]
People living with PNH need our help more than ever. With increasing pressures in our health service, and a cost of living crisis – it is too easy for the […]
