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“Understanding PNH” Webinar – 14th December 2022 – 4.30 pm to 6 pm (GMT)
December 14, 2022 @ 4:30 pm - 6:00 pmFree
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 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.
- Six sessions, once per month on a Wednesday, from 4.30 pm to 6 pm (GMT), 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 theERN-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 sessions will be moderated by Maria Piggin (PNH Support and PNH Global Alliance) and Pascale Olivia Burmester (Lichterzellen and PNH Global Alliance)
Understanding Aplastic Anaemia – 23rd November 2022 – 4.30 pm to 6 pm (GMT)
Speakers: Beatrice Drexler (University Hospital Basel) and Isabelle Flageul
Understanding PNH – 14th December 2022 – 4.30 pm to 6 pm (GMT)
Speakers: Flore Sicre de Fontbrune (Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis) and Ulrike Göbel
Treatment of Aplastic Anaemia – 11th January 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Antonio Risitano (AOU Federico II – Naples) and Jeanne Arenas
Treatment of PNH – 8th February 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Regis Peffault de la Tour (Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis) and Maria Piggin (PNH Support)
Connection between Aplastic Anaemia and PNH – 22nd March 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Carlo Dufour ( IRCCS Istituto Giannina Gaslini, Genoa) and Pascale Burmester (Lichterzellen)
What effect does Aplastic Anaemia and PNH have on my life? – 19th April 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Jens Peter Panse (University Hospital RWTH Aachen) and Maria Piggin (PNH Support)
Pregnancy for Aplastic Anaemia and PNH – 3rd May 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Britta Höchsmann (Ulm University Medical Center (UUMC)) and Alex Naylor (PNH Support)
Life after BMT for Aplastic Anaemia and PNH – 31 May 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Edgar Jost (University Hospital RWTH Aachen) and Pascale Burmester (Lichterzellen)
Psychological impact and well-being in Aplastic Anaemia and PNH – 28 June 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Catarina Baptista and patient to be confirmed