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. Please let us know if you plan to attend so that we can confirm numbers to the café by emailing contact@pnhuk.org. Note that you will need to pay for your own refreshments. […]

This webinar is hosted by the Aplastic Anaemia Trust but open to the PNH Support community as well. A challenge faced by many living with aplastic anaemia and other rare bone marrow failures is understanding their rights around all types of insurance. Join this webinar on 11th May at 5.30pm where Insurance experts Dianne Wheeler […]

The European Reference Network (ERN) -EuroBloodNet Topic on Focus on aplastic anaemia (AA) and paroxysmal nocturnal hemoglobinuria (PNH) for patients and their families is coordinated in collaboration with the following patient associations: PNH Support (focused on PNH represented by Maria Piggin, ePAG of the ERN-EuroBloodNet) and Lichterzellen (focused on AA and PNH and represented by Pascale Olivia Burmester) and Eurordis. It aims to […]

If you're living with aplastic anaemia or another related condition (including PNH) and being supported by either of the charities listed below, whether you have it yourself or you're supporting a close family member, you may have experienced difficulty in navigating the complex benefits system.  This webinar is designed to help you understand the benefits […]

As part of the Better Together project (in which PNH Support is a partner), patients and family members are invited to take part in a free 8 week mindfulness course delivered by Lesley Howells, Maggie’s Lead Consultant Clinical Psychologist for Scotland. Mindfulness can help us even when we feel overwhelmed, it helps us create clarifying and […]