ERN-EuroBloodNet Topic on Focus on aplastic anemia (AA) and paroxysmal nocturnal hemoglobinuria (PNH) for patients and their families is coordinated in collaboration with the following patients 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 disseminate very topical areas related to AA and PNH among the patient community in order to give visibility to the medical services available in Europe, recent quality of life cutting-edge advances in the field of this rare condition (or even very rare, as for PNH) and their treatment options.

PROGRAM

• Nine sessions, once per month on a Wednesday, from 5.30 pm to 7 pm (CET), starting from November 2022.
• 25 min of presentation + 35 min for questions (written in the chat)
• On Zoom
• Program will be recorded and part of the ERN-EuroBloodNet’s EDU YouTube channel

Each session is moderated by a duo of an expert physician and a patient representative, who host the session together. First, the physician introduces the topic and shares clinical knowledge. The patient representative ensures that the information provided are accessible to patients and their families and also highlights which are the key crucial concepts for patients to the expert and asks for clarification of these for the webinar audience. 

Question&Answer session will be moderated by Maria Piggin (PNH Support and PNH Global Alliance) and Pascale Olivia Burmester (Lichterzellen and PNH Global Alliance).

Other patients representatives participated to the educational program: Isabelle Flaguel (French Association HPN France Aplastic Anemia), Ulrike Göbel (The Aplastische Anämi & PNH e.V. ), Alex Naylor (PNH Support).

Also patients organizations participated in the educational program: French Association The Aplastische Anämi & PNH e.V..

• Understanding Aplastic Anemia

         Date: 23^rd November 2022

         Speaker: Beatrice Drexler (University Hospital Basel) and Isabelle Flageul (French Association HPN France Aplastic Anemia)

• Understanding PNH

         Date: 14^th December 2022

         Speaker: Flore Sicre de Fontbrune (Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis) and Ulrike Göbel (The Aplastische Anämi & PNH e.V. and PNH Global Alliance)

• Treatment of Aplastic Anemia

         Date: 11^th January 2023

         Speaker: Antonio Risitano (AOU Federico II - Naples) and Jeanne Arenas

• Treatment of PNH

         Date: 8^th February 2023

         Speaker: Regis Peffault de la Tour (Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis) and Maria Piggin (PNH Support and PNH Global Alliance)

• Connection between Aplastic Anemia and PNH

         Date: 22^nd March 2023

         Speaker: Carlo Dufour ( IRCCS Istituto Giannina Gaslini, Genoa) and Pascale Burmester (Lichterzellen and PNH Global Alliance)

• What effect does Aplastic Anemia and PNH have on my life?

         Date: 19^th April 2023

         Speaker: Jens Peter Panse (University Hospital RWTH Aachen) and Maria Piggin (PNH Support and PNH Global Alliance)

• Pregnancy for Aplastic Anemia and PNH

         Date: 3^rd May 2023

         Speaker: Britta Höchsmann (Ulm University Medical Center (UUMC)) and Alex Naylor (PNH Support)

• Life after BMT for Aplastic Anemia and PNH

         Date: 31^st May 2023

         Speaker: Edgar Jost (University Hospital RWTH Aachen) and Pascale Burmester (Lichterzellen and PNH Global Alliance)

• Psychological impact and well-being in Aplastic Anemia and PNH

         Date: Not defined

         Speaker: Catarina Baptista (Maggie Keswick Jencks Cancer Caring Centres Trust (Maggie's)

You are able to sign up to the full programme of webinars or to each one individually ( see below to sign up to full programme or each one).