Our Events

It sounds so simple… just press the pause button then calmly decide how to respond in a measured way to the problem, what to do, what to say, how to say it. Even when we feel overwhelmed, Mindfulness can helps us create clarifying and compassionate pauses for our minds to settle. Join this eight week […]

Join PNH Support and the PNH National Service for an update on PNH from the PNH National Service to celebrate Rare Disease Day 2024 from 1pm to 1.45pm via Zoom. There will also be a chance to ask your questions. Register to attend using this online form and you will be sent the Zoom details. […]

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