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SUMMARY:"Pregnancy for Aplastic Anaemia and PNH" Webinar - 3rd May 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) \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/pregnancy-for-aplastic-anaemia-and-pnh-webinar-3rd-may-2023-4-30-pm-to-6-pm-gmt/
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DTSTART;TZID=UTC:20230513T103000
DTEND;TZID=UTC:20230513T120000
DTSTAMP:20260805T230228
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UID:7262-1683973800-1683979200@pnhuk.org
SUMMARY:East Anglia PNH Patient and Family meeting - Saturday 13 May 2023
DESCRIPTION:An informal get together for PNH patients and their families to share their experiences of living with PNH. New members are always welcome.\nPlease let us know if you plan to attend so that we can confirm numbers to the café by emailing contact@pnhuk.org.\nNote that you will need to pay for your own refreshments. \nDate: Saturday 13 May 2023 \nTime: 10.30am \nLocation: Bury Lane Farm Shop Café\, A10 By Pass\, Melbourn\, Royston\, Herts\, SG8 6DF
URL:https://pnhuk.org/event/east-anglia-pnh-patient-and-family-zoom-meeting-saturday-18-march-2023/
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DTSTART;TZID=Europe/London:20230525T173000
DTEND;TZID=Europe/London:20230525T183000
DTSTAMP:20260805T230228
CREATED:20230506T161204Z
LAST-MODIFIED:20230506T161204Z
UID:7651-1685035800-1685039400@pnhuk.org
SUMMARY:Life\, Health and Travel Insurance Webinar - 25 May 2023
DESCRIPTION:This webinar is hosted by the Aplastic Anaemia Trust but open to the PNH Support community as well.\n\nA challenge faced by many living with aplastic anaemia and other rare bone marrow failures is understanding their rights around all types of insurance.\nJoin this webinar on 11th May at 5.30pm where Insurance experts Dianne Wheeler and Charlotte Harding will provide information.\n\nSign up here.\n\nWebinar summary:\nSpecialising in assisting individuals with pre-existing medical conditions to obtain life insurance that suits their requirements\, Dianne and Charlotte will explain various types of life & protection insurance policies available\, such as term life\, whole life\, and critical illness cover. Additionally\, they will also discuss the importance of disclosing medical information accurately for proper cover as well as health and travel insurance options for individuals with rare bone marrow and haematological disorders which will help you to be more informed about your insurance options for better decision-making.\n\nDianne Wheeler is a dedicated protection adviser who has been advising clients on financial protection since 2017. Her passion for ensuring her clients and their families receive the best possible protection has driven her success in the industry.\nSince joining The Insurance Surgery in January 2020\, Dianne has brought her unique approach to life insurance to the team. When working with clients\, she takes the time to explain the different options available and never settles for the first solution that comes along. Her commitment to going the extra mile for her clients is exemplified in her work with those who have pre-existing medical conditions. These complex cases require extra time and support\, and Dianne has proven herself to be an expert in navigating these challenges. Charlotte Harding joined The Insurance Surgery team in August 2022. Her personal experience of losing a family member due to a rare bone marrow disorder has made her a big advocate for life insurance. She understands the impact of such situations on families\, and her passion for helping clients protect their loved ones has been a driving force in her work.\nSince joining the industry\, Charlotte has been making waves and has helped the Insurance Surgery win multiple awards\, including the Best Life and Protection Broker at the Insurance Choice Awards & 2 commendations for Best Broker and Going Above and Beyond at the Insurance CX Awards.\nBefore joining the world of insurance\, Charlotte’s background was in events and design. However\, she wanted a change of pace and was eager to learn something new. Her creativity and attention to detail have proved invaluable in her work as an insurance broker\, and she has quickly become a trusted team member.\nIf you have any questions in advance of the webinar\, please do submit your question when you sign up for the event.
URL:https://pnhuk.org/event/life-health-and-travel-insurance-webinar-25-may-2023/
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DTSTART;TZID=Europe/London:20230531T163000
DTEND;TZID=Europe/London:20230531T180000
DTSTAMP:20260805T230228
CREATED:20221210T182422Z
LAST-MODIFIED:20230205T161101Z
UID:7354-1685550600-1685556000@pnhuk.org
SUMMARY:"Life after BMT for Aplastic Anaemia and PNH" Webinar - 31 May 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\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/life-after-bmt-for-aplastic-anaemia-and-pnh-webinar-31-may-2023-4-30-pm-to-6-pm-gmt/
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