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X-WR-CALDESC:Events for PNH Support
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SUMMARY:"Treatment of PNH" Webinar - 8th February 2023 - 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) \n\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/treatment-of-pnh-webinar-8th-february-2023-4-30-pm-to-6-pm-gmt/
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DTSTART;TZID=Europe/London:20230225T090000
DTEND;TZID=Europe/London:20230225T170000
DTSTAMP:20260806T061738
CREATED:20230205T161713Z
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SUMMARY:The Together Walk - 25 February 2023
DESCRIPTION:On the 25th February people up and down the country will be walking to raise money for their chosen Super Rare charity. \nYou decide where the walk will be and the distance. It could be in your local park\, your favourite walk or even laps of your garden! You can walk on your own or with friends and family. \nIf you’d like to connect with other Super Rare walkers\, take a look at the events below to see if anyone in your local area has arranged a walk you can join on the day – or submit your own walk below to invite people to join you! \nWherever you decide to walk on the 25th February\, you are showing people affected by super rare bone marrow conditions that we are stronger together. \nOn the day\, share photos of your walk on social media\, tag in your chosen charity and use the #togetherwalk2023 to see where others are walking. \nFind out more or register your walk here!
URL:https://pnhuk.org/event/the-together-walk-25-february-2023/
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