Our Events

Welcome to Super Rare! Super Rare is all about being rare, but not alone. Our charities designed this campaign together to help people affected by Super Rare conditions to come […]

A challenge faced by many who care for someone living with PNH, is taking time to care for themselves. This webinar offers parents and carers, (who often do not take […]

Join other PNH patients and family members face-to-face at an informal meeting over coffee. Where: Atrium Cafe, National Theatre, London, SE1 9PX (this is very close to the previous venue […]

Moving Forward Course: Living the life that matters to you This free online 7 week course is designed to help you move beyond diagnosis and treatment, and into the life […]

Join PNH patients and family members online for an informal chat. Bring your own refreshments! Zoom meeting details: email contact@pnhuk.org