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DTSTART;TZID=Europe/London:20221214T163000
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UID:7313-1671035400-1671040800@pnhuk.org
SUMMARY:"Understanding PNH" Webinar - 14th December 2022 - 4.30 pm to 6 pm (GMT)
DESCRIPTION: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. \nProgramme\n\nSix sessions\, once per month on a Wednesday\, from 4.30 pm to 6 pm (GMT)\, starting from November 2022.\n25 min of presentation + 35 min for questions (written in the chat)\nOn Zoom\nProgram will be recorded and part of theERN-EuroBloodNet’s EDU YouTube channel\n\nEach 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. \nQuestion & Answer sessions will be moderated by Maria Piggin (PNH Support and PNH Global Alliance) and Pascale Olivia Burmester (Lichterzellen and PNH Global Alliance) \nUnderstanding Aplastic Anaemia – 23rd November 2022 – 4.30 pm to 6 pm (GMT) \nSpeakers: Beatrice Drexler (University Hospital Basel) and Isabelle Flageul \nUnderstanding PNH – 14th December 2022 – 4.30 pm to 6 pm (GMT) \nSpeakers: Flore Sicre de Fontbrune (Assistance Publique-Hôpitaux de Paris\, Hôpital Saint-Louis) and Ulrike Göbel \nTreatment of Aplastic Anaemia – 11th January 2023 – 4.30 pm to 6 pm (GMT) \nSpeakers: Antonio Risitano (AOU Federico II – Naples) and Jeanne Arenas \nTreatment of PNH – 8th February 2023 – 4.30 pm to 6 pm (GMT) \nSpeakers: Regis Peffault de la Tour (Assistance Publique-Hôpitaux de Paris\, Hôpital Saint-Louis) and Maria Piggin (PNH Support) \nConnection between Aplastic Anaemia and PNH – 22nd March 2023  – 4.30 pm to 6 pm (GMT) \nSpeakers: Carlo Dufour ( IRCCS Istituto Giannina Gaslini\, Genoa) and Pascale Burmester (Lichterzellen) \nWhat effect does Aplastic Anaemia and PNH have on my life? – 19th April 2023 – 4.30 pm to 6 pm (GMT) \nSpeakers: Jens Peter Panse (University Hospital RWTH Aachen) and Maria Piggin (PNH Support) \nPregnancy for Aplastic Anaemia and PNH – 3rd May 2023 – 4.30 pm to 6 pm (GMT) \nSpeakers: Britta Höchsmann (Ulm University Medical Center (UUMC)) and Alex Naylor (PNH Support) \nLife after BMT for Aplastic Anaemia and PNH – 31 May 2023 – 4.30 pm to 6 pm (GMT) \nSpeakers: Edgar Jost (University Hospital RWTH Aachen) and Pascale Burmester (Lichterzellen) \nPsychological impact and well-being in Aplastic Anaemia and PNH – 28 June 2023 – 4.30 pm to 6 pm (GMT) \nSpeakers: Catarina Baptista and patient to be confirmed \nREGISTER HERE!
URL:https://pnhuk.org/event/eurobloodnet-webinar-series-on-pnh-and-aplastic-anaemia-wednesdays-every-month-at-4-30pm-to-6pm-from-23-november-2022/
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DTSTART;TZID=UTC:20221217T103000
DTEND;TZID=UTC:20221217T120000
DTSTAMP:20260806T162905
CREATED:20220831T190832Z
LAST-MODIFIED:20220831T191505Z
UID:7259-1671273000-1671278400@pnhuk.org
SUMMARY:East Anglia PNH Patient and Family Zoom meeting - Saturday 17 December 2022
DESCRIPTION:Join PNH patients and family members online for an informal chat. All welcome! BYO refreshments.\n\n\nDate and Time: 10.30am to 12.00pm on Saturday 17th December 2022\nLocation: Zoom. Please email contact@pnhuk.org for Zoom details. \n  \n 
URL:https://pnhuk.org/event/east-anglia-pnh-patient-and-family-zoom-meeting-saturday-17-december-2022/
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