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DTSTART;TZID=Europe/London:20230912T070000
DTEND;TZID=Europe/London:20230912T200000
DTSTAMP:20260729T082121
CREATED:20230804T131336Z
LAST-MODIFIED:20230804T131439Z
UID:7702-1694502000-1694548800@pnhuk.org
SUMMARY:Managing Stress and Uncertainty 12 week online course - starts 12 September\, 7pm to 8pm
DESCRIPTION:This 12 week course will help you learn techniques to help you face the challenges of living with PNH. There are six weeks of learning sessions\, interspersed with six weeks of supported sessions where you are encouraged to try out the techniques you have learned in your day-to-day life.\n\nTopics include understanding stress and uncertainty\, learning how to respond to difficult thoughts and emotions\, how to use everyday mindfulness\, and how to live life in the way that matters to you despite stress and uncertainty. The strategies are straightforward and easy to build into your day.\n\n\nSession dates \n\n12th September 2023 – 7-8pm\n19th September 2023 – 7-8pm\n26th September 2023 – 7-8pm\n3rd October 2023 – 7-8pm\n10th October 2023 – 7-8pm\n17th October 2023 – 7-8pm\n24th October 2023 – 7-8pm\n31st October 2023 – 7-8pm\n7th November 2023 – 7-8pm\n14th November 2023 – 7-8pm\n21st November 2023 – 7-8pm\n28th November 2023 – 7-8pm\n\nWith thanks to…\nOur Better Together Alliance charities are able to work together and offer you this course because of support from The National Lottery Community Fund. Thanks to players of The National Lottery \n\n  \n \n  \nFor more information and to register click here.
URL:https://pnhuk.org/event/managing-stress-and-uncertainty-12-week-online-course-starts-12-september-7pm-to-8pm/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230902T110000
DTEND;TZID=Europe/London:20230902T130000
DTSTAMP:20260729T082121
CREATED:20230719T150251Z
LAST-MODIFIED:20230719T150317Z
UID:7671-1693652400-1693659600@pnhuk.org
SUMMARY:Face-to-face London Patient Meeting - Saturday 2 September 2023
DESCRIPTION:One of our members (Victoria) has offered to host a London face-to-face patient meeting on Saturday 2 September 2023 from 11am at the Hayward Gallery cafe located on the first floor of the Hayward Gallery building in central London. It is a few minutes walk from Waterloo station and is well connected by buses.\n\nThe cafe serves a light lunch salad bar\, a variety of pastries\, teams and coffee. It has a large seating area with tables of various sizes which can be joined together.\n\nSuggested discussion topic: personal experience of fatigue\, perception\, feeling and understanding of it and ways of dealing with it – plus anything else anyone is willing to share.\n\nEmail us on contact@pnhuk.org with any questions.
URL:https://pnhuk.org/event/face-to-face-london-patient-meeting-2-september-2023/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2023/07/palace-g12d176421_1280.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230727T183000
DTEND;TZID=Europe/London:20230727T193000
DTSTAMP:20260729T082121
CREATED:20230719T150923Z
LAST-MODIFIED:20230719T150923Z
UID:7675-1690482600-1690486200@pnhuk.org
SUMMARY:"Managing your Sleep Webinar" on Thursday 27 July
DESCRIPTION:Managing your Sleep Webinar\nWe all experience difficulties with sleep from time to time\, but when you are living with aplastic anaemia and other rare bone marrow failures (including PNH)\, sleep issues can become even more challenging.\n\nJoin the webinar hosted by the Aplastic Anaemia Trust and delivered by Psychologist Catarina Baptista\, to offer you guidance\, tips and useful tools to help you implement and maintain a positive sleep routine.\n\nAbout Catarina Baptista\nCatarina has worked with the Aplastic Anaemia Trust since January 2023 and has delivered the Managing Stress and Living with Uncertainty Course which some of you may have attended. Catarina has worked in health settings for the last 18 years and has vast experience in cancer care\, fatigue and pain.\nCatarina works with people who have been psychologically and emotionally impacted by challenging conditions in group and individual settings. She helps them to find meaning and purpose and live a life that serves them despite their diagnosis. Managing stress\, anxiety\, dealing with humour fluctuations\, adapting to body and emotional changes are some of the areas of biggest investment.\nThe work she does is tailored and she gives a lot of value to the therapeutic dynamic and relation in the process of development and change.\nIf you have any questions for Catarina in advance of the webinar\, please do submit your question when you sign up for the event.\nPlease sign up to join the webinar here
URL:https://pnhuk.org/event/managing-your-sleep-webinar-on-thursday-27-july/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2023/07/cat-g3edd7870a_1280.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230701T100000
DTEND;TZID=Europe/London:20230701T120000
DTSTAMP:20260729T082121
CREATED:20230506T160900Z
LAST-MODIFIED:20230506T160900Z
UID:7648-1688205600-1688212800@pnhuk.org
SUMMARY:Save the date - PNH Support Annual General Meeting - 1 July 2023
DESCRIPTION:The Annual General Meeting for PNH Support which is eligible to be attended by members of PNH Support will be held via Zoom on Saturday 1 July 2023 at 10am to 12pm.\nIf you are a member of PNH Support you will sent the papers for the meeting by email or post (if you don’t have an email address).\nIf you are not a member\, and would like to attend\, please complete a membership form here
URL:https://pnhuk.org/event/save-the-date-pnh-support-annual-general-meeting-1-july-2023/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2023/05/conference-g979050612_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230628T190000
DTEND;TZID=Europe/London:20230628T210000
DTSTAMP:20260729T082121
CREATED:20230608T164949Z
LAST-MODIFIED:20230608T164949Z
UID:7661-1687978800-1687986000@pnhuk.org
SUMMARY:Mindfulness Course - 8 weeks from Wednesday 28 June - 7pm to 9pm
DESCRIPTION:As part of the Better Together project (in which PNH Support is a partner)\, patients and family members are invited to take part in a free 8 week mindfulness course delivered by Lesley Howells\, Maggie’s Lead Consultant Clinical Psychologist for Scotland. Mindfulness can help us even when we feel overwhelmed\, it helps us create clarifying and compassionate pauses for our minds. \nJoin the eight-week course taught online. \nTwo hours each Wednesday evening from 28th June\, 7-9pm.  \nRegister for the course here.
URL:https://pnhuk.org/event/mindfulness-course-8-weeks-from-wednesday-28-june-7pm-to-9pm/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2023/06/odz-ga3b7c6d76_1280.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230622T173000
DTEND;TZID=Europe/London:20230622T183000
DTSTAMP:20260729T082121
CREATED:20230608T164545Z
LAST-MODIFIED:20230608T164545Z
UID:7659-1687455000-1687458600@pnhuk.org
SUMMARY:Webinar on Benefits - Thursday 22 June 2023 - 5.30pm to 6.30pm
DESCRIPTION:If you’re living with aplastic anaemia or another related condition (including PNH) and being supported by either of the charities listed below\, whether you have it yourself or you’re supporting a close family member\, you may have experienced difficulty in navigating the complex benefits system.  This webinar is designed to help you understand the benefits which may be available to you. \n \nThe webinar will be delivered by Atif Kaudri\, who is a Benefits Expert and Lawyer. \nAtif will offer a brief overview of the benefits system and then will be available to answer your questions.  Please feel free to submit your questions when you sign up to the event\, or bring them with you when you attend. \nAtif currently works for Mind as a Lawyer. He is involved in strategic litigation to bring about changes in the substantive law and legal procedures for Mind’s beneficiaries i.e.\, people with mental health problems. \n\nAtif has worked in the welfare rights field since 2005. Initially he volunteered at his local Citizens Advice Bureau (CAB) while completing his Postgraduate Diploma in Professional Legal Skills from City University\, London. From 2008 to 2014 he worked for various Macmillan CAB Welfare Benefits services while managing and providing casework services including tribunal representation. He was in a similar role since 2014 for 7 years for Maggie’s Oxford. He was also seconded to the Aplastic Anaemia Trust during his time at Maggie’s. \nTo register for this webinar click here.
URL:https://pnhuk.org/event/webinar-on-benefits-thursday-22-june-2023-5-30pm-to-6-30pm/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2022/09/video-conference-g2b5d1f97a_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230531T163000
DTEND;TZID=Europe/London:20230531T180000
DTSTAMP:20260729T082121
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/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2022/03/sketch-3042584_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230525T173000
DTEND;TZID=Europe/London:20230525T183000
DTSTAMP:20260729T082121
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/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2022/09/video-conference-g2b5d1f97a_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230513T103000
DTEND;TZID=UTC:20230513T120000
DTSTAMP:20260729T082121
CREATED:20220831T191443Z
LAST-MODIFIED:20230509T134121Z
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/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2022/04/coffee-g5c9910f10_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230503T163000
DTEND;TZID=Europe/London:20230503T180000
DTSTAMP:20260729T082121
CREATED:20221210T182151Z
LAST-MODIFIED:20230205T160959Z
UID:7352-1683131400-1683136800@pnhuk.org
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/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2021/04/Pregnancy-and-Fertility-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230419T163000
DTEND;TZID=Europe/London:20230419T183000
DTSTAMP:20260729T082121
CREATED:20221210T182041Z
LAST-MODIFIED:20230205T160848Z
UID:7350-1681921800-1681929000@pnhuk.org
SUMMARY:"What effect does Aplastic Anaemia and PNH have on my life?" Webinar  - 19th April 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) \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/what-effect-does-aplastic-anaemia-and-pnh-have-on-my-life-webinar-19th-april-2023-4-30-pm-to-6-pm-gmt/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2021/04/cyclist-3202481-1-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230322T163000
DTEND;TZID=Europe/London:20230322T180000
DTSTAMP:20260729T082121
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/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2021/04/what-is-PNH.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230318T100000
DTEND;TZID=Europe/London:20230318T130000
DTSTAMP:20260729T082121
CREATED:20221028T175759Z
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/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2022/10/18.03.22-Save-the-Date-FBSquare-800-×-800px.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230225T090000
DTEND;TZID=Europe/London:20230225T170000
DTSTAMP:20260729T082121
CREATED:20230205T161713Z
LAST-MODIFIED:20230205T161759Z
UID:7404-1677315600-1677344400@pnhuk.org
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/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2023/01/IMG_20221001_104604-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230208T163000
DTEND;TZID=Europe/London:20230208T180000
DTSTAMP:20260729T082121
CREATED:20221210T181700Z
LAST-MODIFIED:20230205T161349Z
UID:7346-1675873800-1675879200@pnhuk.org
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/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2022/03/pharmacy-3087598-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230111T163000
DTEND;TZID=Europe/London:20230111T180000
DTSTAMP:20260729T082121
CREATED:20221210T181256Z
LAST-MODIFIED:20221210T181437Z
UID:7343-1673454600-1673460000@pnhuk.org
SUMMARY:"Treatment of Aplastic Anaemia" Webinar - 11th January 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) \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/treatment-of-aplastic-anaemia-webinar-11th-january-2023-4-30-pm-to-6-pm-gmt/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2022/09/video-conference-g2b5d1f97a_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221217T103000
DTEND;TZID=UTC:20221217T120000
DTSTAMP:20260729T082121
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/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2021/04/hot-chocolate-1782623_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20221214T163000
DTEND;TZID=Europe/London:20221214T180000
DTSTAMP:20260729T082121
CREATED:20221108T081237Z
LAST-MODIFIED:20221210T181220Z
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/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2022/11/Screenshot-2022-11-08-at-08.10.26.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20221105T100000
DTEND;TZID=Europe/London:20221105T113000
DTSTAMP:20260729T082121
CREATED:20221014T185022Z
LAST-MODIFIED:20221014T185022Z
UID:7298-1667642400-1667647800@pnhuk.org
SUMMARY:PNH Patient Virtual Meeting: Saturday 5 November 2022 - 10am to 11.30am
DESCRIPTION:PNH Support\, PNH Scotland and the PNH National Service invite you to join us on Saturday 5 November 2022\, 10am to 11.30am via Zoom\nAgenda:\n\n10am – PNH and meningitis – Louise Arnold\, Advanced Nurse Practitioner – St James’s Hospital\, Leeds\n10.45am – Managing Fatigue – Claire Traub – Specialist Occupational Therapist\, Addenbrooke’s Hospital\, Cambridge\n\nRegister here: https://us06web.zoom.us/…/tZMtf-2uqjkuE9bmQKtWBHdEMDhE…
URL:https://pnhuk.org/event/pnh-patient-virtual-meeting-saturday-5-november-2022-10am-to-11-30am/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2022/10/squirrels-834483_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220917T103000
DTEND;TZID=UTC:20220917T120000
DTSTAMP:20260729T082121
CREATED:20220831T190355Z
LAST-MODIFIED:20220831T190355Z
UID:7256-1663410600-1663416000@pnhuk.org
SUMMARY:East Anglia Patient and Family Coffee and Cake Meeting - Saturday 17 September 2022
DESCRIPTION:An informal get together for PNH patients and their families to share their experiences of living with PNH. New members are always welcome.\nWe have booked outside seating\, so fingers crossed that the weather will be good! Please 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 17 September 2022 \nTime: 10.30am \nLocation: Bury Lane Farm Shop Café\, A10 By Pass\, Melbourn\, Royston\, Herts\, SG8 6DF
URL:https://pnhuk.org/event/east-anglia-patient-and-family-coffee-and-cake-meeting-saturday-17-september-2022/
LOCATION:Bury Lane Farm Shop Café\, A10 By Pass\, Melbourn\, Royston\, Herts\, SG8 6DF\, SG8 6DF\, United Kingdom
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2022/08/beer-garden-4465321_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220908T180000
DTEND;TZID=Europe/London:20220908T190000
DTSTAMP:20260729T082121
CREATED:20220905T085156Z
LAST-MODIFIED:20220905T173614Z
UID:7271-1662660000-1662663600@pnhuk.org
SUMMARY:Sepsis Awareness Webinar hosted by the Aplastic Anaemia Trust - 8 September - 6pm to 7pm
DESCRIPTION:  \n\n\n\nSepsis is a serious condition\, and can be life-threatening if left untreated. For people with aplastic anaemia and other rare bone marrow failures\, the disease itself\, and the impact that the treatments have on the immune system mean that people with these conditions are at an increased risk of developing sepsis\, and experiencing complications if it is left untreated.\n\n\n\n\n\n\n\n\nJoin the AAT for an informative webinar about Sepsis\, and learn more about its signs\, symptoms\, and what to do if you feel concerned that something isn’t right. We know that is isn’t always easy to speak up when you feel concerned about your health\, and that sometimes healthcare professionals don’t always fully understand the risk of sepsis in relation to aplastic anaemia and bone marrow failure conditions. \nWe will be joined by Bryony Forrest\, a Haematology Clinical Nurse Specialist based in Leeds\, who will be on hand to answer your questions. \n\n\n\n\n\nRegister to attend here
URL:https://pnhuk.org/event/sepsis-awareness-webinar-hosted-by-the-aplastic-anaemia-trust/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2022/09/video-conference-g2b5d1f97a_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220705T160000
DTEND;TZID=UTC:20220705T170000
DTSTAMP:20260729T082121
CREATED:20220620T175051Z
LAST-MODIFIED:20220620T175126Z
UID:7205-1657036800-1657040400@pnhuk.org
SUMMARY:ERN-EuroBloodNet Webinars for Patients: Risk and Course of COVID-19 in AA/ PNH Patients\, Including Vaccination Strategies
DESCRIPTION:The European Reference Network\, EuroBloodNet has organised a patient webinar: Risk and Course of COVID-19 in AA and/or PNH Patients\, including vaccination strategies. The webinar aims to provide highly specialised and cutting-edge knowledge for patients and their families. It is led by experts in the field of AA and PNH\, health professionals and patients representatives. The program has been shaped with 2 patients associations: PNH Support (focused on PNH represented by Maria Piggin) and Lichterzellen (focused on AA and PNH and represented by Pascale Olivia Burmester).\n\nThe webinar will be held on Tuesday 5th of July from 4pm to 5pm (BST)\nWebinar contents:\n\n\nPresentations: Prof Corrado Girmenia (AOU Policlinico Umberto I – Rome) and Dr Austin Kulasekararaj (King’s College London).\nRound Table: Prof Régis Peffault de la Tour (Assistance Publique-Hôpitaux de Paris\, Hôpital Saint-Louis)\, Prof Antonio Risitano (AOU Federico II – Naples)\, Prof Carlo Dufour (IRCCS Institute Giannina Gaslini – Genoa).\nQuestion&Answer: Maria Piggin (PNH Support and PNH Global Alliance) and Pascale Olivia Burmester (Lichterzellen and PNH Global Alliance) are moderating the session.\n\n\nSubmit your questions to be answered at the webinar and register to attend.\nIf you would like to ask any questions on the risks and course of COVID in AA and/or PNH patients\, including vaccination strategies you can click on the link below and submit them here\n\n \nRegister here to attend the webinar \nClick here to register for the webinar.
URL:https://pnhuk.org/event/ern-eurobloodnet-webinars-for-patients-risk-and-course-of-covid-19-in-aa-and-pnh-patients-including-vaccination-strategies/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2021/04/covid-19-4960254_1920-e1587754505414.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220702T120000
DTEND;TZID=UTC:20220702T143000
DTSTAMP:20260729T082121
CREATED:20220620T175753Z
LAST-MODIFIED:20220620T175807Z
UID:7208-1656763200-1656772200@pnhuk.org
SUMMARY:East Anglia PNH Support Group Summer Meal - Saturday 2 July 2022 at 12pm
DESCRIPTION:The East Anglia PNH Support patient group is having an informal pub garden lunch on Saturday 2 July at 12pm. This is a chance for patients and their families to get together. Everyone welcome!\nFor more details and to RSVP (by June 27th 2022) please email contact@pnhuk.org.
URL:https://pnhuk.org/event/east-anglia-pnh-support-group-summer-meal-2-july-2022-at-12pm/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2022/06/beer-garden-4465321_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220618T100000
DTEND;TZID=UTC:20220618T123000
DTSTAMP:20260729T082121
CREATED:20220419T121117Z
LAST-MODIFIED:20220419T121745Z
UID:7152-1655546400-1655555400@pnhuk.org
SUMMARY:PNH Support Members' Annual General Meeting - 18 June 2022 - 10am to 12.30pm
DESCRIPTION:Members of PNH Support are welcome to join our AGM to be held virtually on Zoom on 18 June 2022 and vote on the annual report and accounts and any other proposed resolutions. Members will also hear about what activities we have undertaken in the past year ending 31 March 2022 and contribute their thoughts on our plans for the coming year. \nIf you are a PNH patient or family member living in England\, Wales or Northern Ireland and would like to become a member of PNH Support (membership is free) please complete this form. \nPlease contact us on contact@pnhuk.org with questions or for the Zoom details (if you are already a member).
URL:https://pnhuk.org/event/pnh-support-members-annual-general-meeting-18-june-2022-10am-to-12-30pm/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220521T103000
DTEND;TZID=UTC:20220521T123000
DTSTAMP:20260729T082121
CREATED:20220419T101420Z
LAST-MODIFIED:20220419T120217Z
UID:7147-1653129000-1653136200@pnhuk.org
SUMMARY:East Anglia Patient and Family Coffee and Cake meeting
DESCRIPTION:An informal get together for PNH patients and their families to share their experiences of living with PNH. New members are always welcome.\nWe have booked outside seating\, so fingers crossed that the weather will be good! Please let us know if you plan to attend so that we can confirm numbers to the café.\nNote that you will need to pay for your own refreshments.\n\n\nLocation: Bury Lane Farm Shop Café\, A10 By Pass\, Melbourn\, Royston\, Herts\, SG8 6DF https://burylanefarmshop.co.uk/contact \n\n\nFor confirmation of attendance or any questions please email: contact@pnhuk.org
URL:https://pnhuk.org/event/east-anglia-patient-and-family-coffee-and-cake-meeting/
LOCATION:Bury Lane Farm Shop Café\, A10 By Pass\, Melbourn\, Royston\, Herts\, SG8 6DF\, SG8 6DF\, United Kingdom
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220420T173000
DTEND;TZID=UTC:20220420T183000
DTSTAMP:20260729T082121
CREATED:20220321T153135Z
LAST-MODIFIED:20220321T171641Z
UID:7121-1650475800-1650479400@pnhuk.org
SUMMARY:Navigating the new 'normal' with no COVID restrictions -  20 April 2022
DESCRIPTION:How do you feel about returning to ‘normal’ without COVID restrictions?\n\nWe are aware that this is a daunting prospect for many of us who have spent many months shielding and who may still be.\nJoin us on Wednesday 20 April 2022\, 5.30pm to 6.30pm via Zoom when Philip Alexander\, the Lead Psychotherapist from Haemato-oncology at Kings College Hospital\, London will lead a discussion on this topic.\n\nPlease register to attend by emailing contact@pnhuk.org.\n\nPlease also send any questions you would like answered ahead of the session to the same email address.
URL:https://pnhuk.org/event/how-do-you-feel-about-covid-restrictions-lifting-20-april-2022/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220312T103000
DTEND;TZID=UTC:20220312T120000
DTSTAMP:20260729T082121
CREATED:20220202T183843Z
LAST-MODIFIED:20220202T184028Z
UID:7065-1647081000-1647086400@pnhuk.org
SUMMARY:East Anglia PNH Patient and Family Zoom meeting - 12 March 2022
DESCRIPTION:PNH patients and family members are welcome to join the East Anglia Patient and Family Zoom meeting. \nDate and Time: 10.30am to 12.00pm on Saturday 12th March 2022\nLocation: Zoom\nDetails: Join PNH patients and family members online for an informal chat. BYO refreshments.\nAll welcome! \nBYO refreshments. \n  \nPlease email contact@pnhuk.org for Zoom details.
URL:https://pnhuk.org/event/east-anglia-pnh-patient-and-family-zoom-meeting-12-march-2022/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220223T050000
DTEND;TZID=UTC:20220223T180000
DTSTAMP:20260729T082121
CREATED:20220213T152238Z
LAST-MODIFIED:20220213T153659Z
UID:7074-1645592400-1645639200@pnhuk.org
SUMMARY:Looking after your mental wellbeing - join the AAT's Wellbeing Wednesdays!
DESCRIPTION:Maggie’s lead psychologist Lesley Howells joins the Aplastic Anaemia Trust (AAT) and their patient community members (including those with PNH) every week\, for an interactive and friendly session via Zoom with the focus on mental wellbeing at this very challenging time. \nWednesdays from 5pm to 6pm \nStruggling to cope with the uncertainty? It’s all over-whelming? Self-isolation is bringing back memories of gruelling treatment? You’d like to learn about simple ways to stay mentally and emotionally well or just want to chat with a specialist about your situation? Then this friendly weeky chat is for you. \nThere’s no commitment to join every week\, and if you’ve never joined us before do come to whatever session works for you – we would love to meet you. \nPlease register here \nPlease feel free to drop the AAT a line in advance if you have a specific question for Lesley or a concern that’s been playing on your mind – support@theaat.org.uk \nThe AAT is hugely grateful to Lesley and the wonderful Maggie’s Centres for their help at this tough time.
URL:https://pnhuk.org/event/looking-after-your-mental-wellbeing-join-the-aats-wellbeing-wednesdays/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220216T173000
DTEND;TZID=UTC:20220216T183000
DTSTAMP:20260729T082121
CREATED:20220213T151606Z
LAST-MODIFIED:20220213T151606Z
UID:7072-1645032600-1645036200@pnhuk.org
SUMMARY:Webinar on Living with aplastic anaemia or PNH - with CNS\, Louise Arnold - 16 February 2022- 5.30pm
DESCRIPTION:This webinar hosted by the Aplastic Anaemia Trust (AAT) is all about dealing with any day to day difficulties people with aplastic anaemia might be struggling with. Whether you’re dealing with a sore mouth\, managing medication side effects or dealing with infections\, or something else entirely – bring your gripes and concerns to get tips on how to feel better. \nThis is your chance to raise your bugbears with a clinical nurse specialist\, and connect with a friendly online room full of people who understand what you’re going through. \nThis session will be led by Louise Arnold\, a Trainee Advanced Clinical Practitioner (Nurse) from the Department of Haematology at St James’ Institute of Oncology. \nTo register click here. \nIf you have a question for Louise\, or a specific topic you’d like us to talk about\, we would appreciate it if you could send it to the AAT in advance\, either at the time of booking or by emailing us at support@theaat.org.uk.
URL:https://pnhuk.org/event/webinar-on-living-with-aplastic-anaemia-or-pnh-with-cns-louise-arnold-16-february-2022-5-30pm/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20211211T103000
DTEND;TZID=UTC:20211211T120000
DTSTAMP:20260729T082121
CREATED:20211003T162654Z
LAST-MODIFIED:20211124T095823Z
UID:7040-1639218600-1639224000@pnhuk.org
SUMMARY:PNH Support and Connect December Meeting via  Zoom - Saturday 11 December
DESCRIPTION:Join us for a pre- holiday season patient and family Zoom meeting from 10.30am to 12pm. We will have guest speakers including PNH consultants to speak about latest updates and research on PNH. BYO refreshments! \n  \nInstructions on using Zoom: https://www.ageuk.org.uk/…/how-to-use-zoom-for-the…
URL:https://pnhuk.org/event/pnh-support-and-connect-december-meeting-via-zoom-saturday-11-december/
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