Our Events

An informal get together for PNH patients and their families to share their experiences of living with PNH. New members are always welcome. We have booked outside seating, so fingers crossed that the weather will be good! Please let us know if you plan to attend so that we can confirm numbers to the café. […]

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 together as a community. So sign up for an event, organise one, or order your pack now to start planning how you can get involved […]

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 the time to care for themselves) tools to support themselves while caring for the people they love.   Register here

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 at the Hayward Gallery) Time: 11am to 12.30pm Date: Saturday 13 April 2024 All welcome Please email contact@pnhuk.org with any quesitons.

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 that matters to you. Living the life that matters to us is key to everyone's emotional wellbeing. But following significant treatment or when treatment is […]