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 […]

PNH Support, PNH Scotland and the PNH National Service invite you to join us on Saturday 5 November 2022, 10am to 11.30am via Zoom Agenda: 10am - PNH and meningitis - Louise Arnold, Advanced Nurse Practitioner - St James's Hospital, Leeds 10.45am - Managing Fatigue - Claire Traub - Specialist Occupational Therapist, Addenbrooke's Hospital, Cambridge […]

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 […]

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 […]