Our Events

Join PNH patients and family members online for an informal chat. All welcome! BYO refreshments. Date and Time: 10.30am to 12.00pm on Saturday 17th December 2022 Location: Zoom. Please email contact@pnhuk.org for Zoom details.    

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 […]

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 […]

On the 25th February people up and down the country will be walking to raise money for their chosen Super Rare charity. You decide where the walk will be and the distance. It could be in your local park, your favourite walk or even laps of your garden! You can walk on your own or […]

Due to the train strike which has been announced for 18 March 2023 and the limited number of patients able to attend in person, we have taken the decision to move to this an online event only (via Zoom). Our PNH Patient and Family Conference is back co-hosted by PNH Support, PNH Scotland and the PNH National […]