Our Events

The European Reference Network, EuroBloodNet has organised a patient webinar: Risk and Course of COVID-19 in AA and/or PNH Patients, including vaccination strategies. The webinar aims to provide highly specialised and cutting-edge knowledge for patients and their families. It is led by experts in the field of AA and PNH, health professionals and patients representatives. The […]

  Sepsis is a serious condition, and can be life-threatening if left untreated. For people with aplastic anaemia and other rare bone marrow failures, the disease itself, and the impact that the treatments have on the immune system mean that people with these conditions are at an increased risk of developing sepsis, and experiencing complications […]

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 […]