I have been diagnosed and living with Paroxysmal nocturnal haemoglobinuria (PNH), an ultra-rare bone marrow failure disease for several years now.

I am taking part in a walk in support of PNH Support. Whilst this walk might seem, well like a walk in a park to most, I suffer from fatigue and get out of breath just walking round the shops (so I hope the park has plenty of benches haha).

https://pnhuk.org/event/east-london-epping-forest-super-rare-walk-2025-1-march-2025/

Your support 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.

By donating, you 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. Your donation 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.