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DTSTAMP:20260806T061722
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LAST-MODIFIED:20230301T191106Z
UID:7307-1679133600-1679144400@pnhuk.org
SUMMARY:Online PNH Patient and Family Conference - Saturday 18 March 2023
DESCRIPTION:Due to the train strike which has been announced for 18 March 2023 and the limited number of patients able to attend in person\, we have taken the decision to move to this an online event only (via Zoom).\n\nOur PNH Patient and Family Conference is back co-hosted by PNH Support\, PNH Scotland and the PNH National Service.\n\n\nVenue: You will be provided with the Zoom details after you register\n\nTime: 10am to 1pm \n\nIndicative agenda:\n9.30am –  Zoom session opens for people to login.\n10.00am – Welcome and introductions from PNH Support/PNH Scotland/PNH National Service\n10.15am – Icebreaker to get to know one another (via Zoom break out rooms)\n11.00am – Overview of PNH and updates on PNH research and clinical trials –  PNH National Service\n11.45am – Q&A\n12.00pm – Comfort break\n12.05pm – Managing Uncertainty – Lesley Howells (Lead Psychologist\, Maggie’s Centre).\n\nLesley worked as a Clinical Psychologist in the NHS for 18 years before joining Maggie’s. She specialised in working with people juggling the demands of chronic physical health problems such as cancer\, diabetes and cystic fibrosis. She is an NHS Accredited Trainer in Advanced Communication\, Accredited Mindfulness Teacher and has specialist expertise in the teaching and supervision of NHS Specialist Palliative Care professionals. Since qualifying in 1991 her research and clinical focus has been families\, individuals and couples facing life-changing trauma and transitions\, primarily those prompted by changes in physical health (e.g. families with cystic fibrosis\, diabetes).Before joining Maggie’s in 2014\, she was the Clinical Health Psychology Lead for NHS Dumfries and Galloway. Lesley is also working to create a plan for provision of psychological support for the bone marrow failure patient communities as part of the Better Together Project. \n12.25 – Q&A \n12.40 – Break out room small group discussions on what further support/information is needed by patients/families \n1pm- Conference closes \n\n\nPlease register here by 15 March 2023\n\n\nFor any questions email contact@pnhuk.org.
URL:https://pnhuk.org/event/save-the-date-patient-and-family-conference-saturday-18-march-2023/
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DTSTART;TZID=Europe/London:20230322T163000
DTEND;TZID=Europe/London:20230322T180000
DTSTAMP:20260806T061722
CREATED:20221210T181904Z
LAST-MODIFIED:20230205T161322Z
UID:7348-1679502600-1679508000@pnhuk.org
SUMMARY:"Connection between Aplastic Anaemia and PNH" Webinar - 22nd March 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\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/connection-between-aplastic-anaemia-and-pnh-webinar-22nd-march-2023-4-30-pm-to-6-pm-gmt/
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