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.
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..
Date: 23rd November 2022
Speaker: Beatrice Drexler (University Hospital Basel) and Isabelle Flageul (French Association HPN France Aplastic Anemia)
Date: 14th 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)
Date: 11th January 2023
Speaker: Antonio Risitano (AOU Federico II - Naples) and Jeanne Arenas
Date: 8th 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)
Date: 22nd March 2023
Speaker: Carlo Dufour ( IRCCS Istituto Giannina Gaslini, Genoa) and Pascale Burmester (Lichterzellen and PNH Global Alliance)
Date: 19th April 2023
Speaker: Jens Peter Panse (University Hospital RWTH Aachen) and Maria Piggin (PNH Support and PNH Global Alliance)
Date: 3rd May 2023
Speaker: Britta Höchsmann (Ulm University Medical Center (UUMC)) and Alex Naylor (PNH Support)
Date: 31st May 2023
Speaker: Edgar Jost (University Hospital RWTH Aachen) and Pascale Burmester (Lichterzellen and PNH Global Alliance)
Date: 28th June 2023
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).