If you’re a young person in the UK navigating life with PNH, a fellow PNH patient, has set up a special WhatsApp group just for you! 🎉 This group brings together 18 […]
Today is the big day – Global PNH Awareness Day! Thank you to everyone who has been involved in our awareness campaign. Your support, shares, and engagement have made a […]
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 […]
