Our Events

Managing Stress and Uncertainty Online 6 Week Course This course is made available to our members through the National Lottery funded project called "Better Together" and it is part of the emotional wellbeing offering which is part of this project. “I became so much more confident...you feel that you are valid and it is normal […]

Sick of always having to explain your condition? Join others living with rare haematological conditions from our "Better Together" project partner charities (listed below) for a cuppa on Saturday 12th October in Edinburgh, London, Birmingham or Leeds and chat with other people affected by rare conditions affecting the blood. Venues: London -Basement Bar, Drake and […]

A fellow PNH patient and PNH Support UK member is hosting an informal meet up for younger PNH patients (approx 18 to approx 30 years)! Date: Saturday, 26th of October 2024Time: 4-6 pm.Venue: National Theatre Cafe (Ground floor) on the South Bank in London, SE1 9PX - nearest station is Waterloo (train and tube) - […]

If you're living with PNH or you're supporting a close family member, it can be challenging to think about how to move forward following significant treatment, or when treatment is life-long. Co-created by members of the 6 charities listed below, this online course is designed to help you move beyond diagnosis and treatment, and into […]

Join other PNH patients/ family members for an informal chat via Zoom. Please note that no medical advice will be provided but signposting can be provided if needed. All welcome! Date: Saturday 9 November 2024 Time: 10.30am to 12pm Please email contact@pnhuk.org for the Zoom details. Please also let us know if you need help […]