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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240309T103000
DTEND;TZID=Europe/London:20240309T120000
DTSTAMP:20260729T051450
CREATED:20240203T143404Z
LAST-MODIFIED:20240203T143404Z
UID:7867-1709980200-1709985600@pnhuk.org
SUMMARY:East Anglia Face-to- Face Patient and Family Meeting - 9 March 2024
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. Email contact@pnhuk.org. \nPlease note that you will need to pay for your own refreshments. \nLocation: Bury Lane Farm Shop Café\, A10 By Pass\, Melbourn\, Royston\, Herts\, SG8 6DF ​ \n(https://burylanefarmshop.co.uk/contact )
URL:https://pnhuk.org/event/east-anglia-face-to-face-patient-and-family-meeting-9-march-2024/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2021/04/tea-2356764_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240229T130000
DTEND;TZID=Europe/London:20240229T134500
DTSTAMP:20260729T051450
CREATED:20240209T183959Z
LAST-MODIFIED:20240209T184225Z
UID:7876-1709211600-1709214300@pnhuk.org
SUMMARY:Update on PNH - Rare Disease Day - Thursday 29 February 2024 -1pm to 1.45pm
DESCRIPTION:Join PNH Support and the PNH National Service for an update on PNH from the PNH National Service to celebrate Rare Disease Day 2024 from 1pm to 1.45pm via Zoom. There will also be a chance to ask your questions. \nRegister to attend using this online form and you will be sent the Zoom details. Please watch out for the email which may go to your Junk email folder. \nPlease email contact@pnhuk.org with any questions.
URL:https://pnhuk.org/event/update-on-pnh-rare-disease-day-thursday-29-february-2024-1pm-1-45pm/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2024/02/fb_eventcover1200_628_.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240227T190000
DTEND;TZID=Europe/London:20240227T203000
DTSTAMP:20260729T051450
CREATED:20240203T142020Z
LAST-MODIFIED:20240203T142020Z
UID:7864-1709060400-1709065800@pnhuk.org
SUMMARY:Mindfulness Online Course starting 27 Feb - 7pm to 8.30pm
DESCRIPTION:It sounds so simple… just press the pause button then calmly decide how to respond in a measured way to the problem\, what to do\, what to say\, how to say it. \nEven when we feel overwhelmed\, Mindfulness can helps us create clarifying and compassionate pauses for our minds to settle. \nJoin this eight week mindfulness course. \nSession dates: \n27th February 2024 – 7pm-8.30pm\n5th March 2024 – 7pm-8.30pm\n12th March 2024 – 7pm-8.30pm\n19th March 2024 – 7pm-8.30pm\n26th March 2024 – 7pm-8.30pm\n2nd April 2024 – 7pm-8.30pm\n9th April 2024 – 7pm-8.30pm\n16th April 2024 – 7pm-8.30pm \nRegister here
URL:https://pnhuk.org/event/mindfulness-online-course-starting-27-feb-7pm-to-8-30pm/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2024/02/Mindfulness-Course-Feb24-Assets-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240125T183000
DTEND;TZID=Europe/London:20240125T200000
DTSTAMP:20260729T051450
CREATED:20240105T132307Z
LAST-MODIFIED:20240105T132307Z
UID:7819-1706207400-1706212800@pnhuk.org
SUMMARY:Free Online Managing Stress and Uncertainty Course from 25 Jan to 29 Feb 2024
DESCRIPTION:Managing Stress and Uncertainty Course with Catarina Baptista\n\nThe dates of this previously advertised course have now shifted by one day each. It now starts on Thursday 25 January and finishes on Thursday 29 February. Apologies for any inconvenience caused. Those who have already registered have been notified directly.\nThis 6 week online course will help you learn techniques to help you face the challenges of living with PNH. There are six weekly sessions each with 60 minutes of psycho-educational content and 30 minutes of meditation/reflective practice. The strategies are straightforward and easy to build into your day.\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. Session dates and times below:\n\nThursday 25th January\, 18.30 – 20.00\nThursday 1st February\, 18.30 – 20.00\nThursday 8th February\, 18.30 – 20.00\nThursday 15th February\, 18.30 – 20.00\nThursday 22nd February\, 18.30 – 20.00\nThursday 29th February\, 18.30 – 20.00\n\nRegister here
URL:https://pnhuk.org/event/free-online-managing-stress-and-uncertainty-course-from-25-jan-to-29-feb-2024/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2024/01/MSU_Jan24_landscape_PNHSupport.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240125T170000
DTEND;TZID=Europe/London:20240125T180000
DTSTAMP:20260729T051450
CREATED:20231220T091123Z
LAST-MODIFIED:20231220T091123Z
UID:7812-1706202000-1706205600@pnhuk.org
SUMMARY:Everyday Mindfulness Webinar - 25 January 2024
DESCRIPTION:Join this webinar with clinical psychologist\, Lesley Howells\, to learn everyday mindfulness strategies to quieten the busyness of our minds and help us live a more meaningful life despite the challenges we face. This webinar is also a taster for the eight week Mindfulness Courses that the Better Together project run for the communities of 6 small charities including PNH Support (through funding received from the National Lottery Community Fund).\n\n\nRegister here to attend. :
URL:https://pnhuk.org/event/everyday-mindfulness-webinar-25-january-2024/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2023/12/11.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240118T183000
DTEND;TZID=Europe/London:20240118T193000
DTSTAMP:20260729T051450
CREATED:20231220T090750Z
LAST-MODIFIED:20231220T091153Z
UID:7809-1705602600-1705606200@pnhuk.org
SUMMARY:Benefits Webinar - 18 January 2024
DESCRIPTION:Benefit Advisor\, Robert Mandlestam is delivering this webinar to bring you information about the benefits you may be entitled to if you or someone you support has PNH\, and advise about how to apply for them.\nThis webinar will include the following:\n-Universal Credit\n-Personal Independence Payment\n-Carers Allowance\n-Employment and Support Allowance\n-Local support (council tax help and local hardship schemes)\n\nRegister here to attend.
URL:https://pnhuk.org/event/benefits-webinar-18-january-2024/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2023/12/12.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20231209T100000
DTEND;TZID=Europe/London:20231209T110000
DTSTAMP:20260729T051450
CREATED:20231118T182328Z
LAST-MODIFIED:20231119T131808Z
UID:7773-1702116000-1702119600@pnhuk.org
SUMMARY:Rare Voices Report Findings & Discussion Session - 9 December 2023 - 10am to 11am
DESCRIPTION:The Rare Voices report (launched on 14 November 2023) sets out the findings from the first ever national community survey into rare bone marrow conditions.  This survey was a collaborative effort between the following charities: \n\nPNH Support\nThe Aplastic Anaemia Trust\nFanconi Hope (Fanconi Anaemia)\nDC Action (Dyskeratosis Congenita and Telomere Biology Disorders)\nSDS UK (Schwachman Diamond Syndrome)\nDBA UK (Diamond Blackfan Anaemia)\nCAN – Congenital Anaemia Network (Red cell enzyme disorders (eg. pyruvate kinase deficiency\, G6PD deficiency)\, Red cell membrane disorders (eg. Hereditary spherocytosis\, hereditary elliptocytosis\, pyropoikilocytosis)\, Sideroblastic anaemia (CSA)\,Congenital Dyserythropoietic Anaemia\n\nOn Saturday 9 December (10am to 11am) we welcome patients and families from all the charities/conditions listed above to an online Zoom session from 10am to 11am to hear the main findings\, our commitments to addressing the survey findings and our recommendations to our stakeholders to address them too. Attendees will have the opportunity to ask questions and make comments should they wish. We also hope to be able to split patient/carers/family members into Zoom break out rooms with others living with the same condition where they can ask questions relevant to their condition. \nTo register for the Zoom session please complete this short online form after which you will be emailed the Zoom details. \nFor any questions please email contact@pnhuk.org. \n 
URL:https://pnhuk.org/event/rare-voices-report-findings-discussion-session-9-december-2023-10am-to-11am/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2023/11/Twitter_Rare-Voices_-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20231202T110000
DTEND;TZID=Europe/London:20231202T130000
DTSTAMP:20260729T051450
CREATED:20230907T134718Z
LAST-MODIFIED:20231119T131720Z
UID:7720-1701514800-1701522000@pnhuk.org
SUMMARY:London Face-to-face Patient & Family Meeting - Saturday 2 December 2023
DESCRIPTION:One of our members (Victoria) has offered to host a London face-to-face patient and family meeting on Saturday 2 December 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\nEmail us on contact@pnhuk.org with any questions.
URL:https://pnhuk.org/event/face-to-face-london-patient-family-meeting-saturday-2-december-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:20231202T103000
DTEND;TZID=Europe/London:20231202T120000
DTSTAMP:20260729T051450
CREATED:20230910T142455Z
LAST-MODIFIED:20231028T142016Z
UID:7724-1701513000-1701518400@pnhuk.org
SUMMARY:East Anglia Patient and Family Meeting/Christmas Meal - 2 December 2023
DESCRIPTION:The East Anglia PNH support group are having a Christmas lunch at 12.30pm on Saturday 2nd December 2023.\n\nIt will be at The Tickell Arms\, North Road\, Whittlesford\, Cambridge\, CB22 4NZ. Please see their website for information about Christmas meals.\n\nAll Patients & their family are more than welcome to join us  If you would like to come please email contact@pnhuk.org for more information.\n\nWe look forward to kicking off the festivities with PNH Support friends old and new.\n\n.
URL:https://pnhuk.org/event/east-anglia-online-patient-and-family-meeting/
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:20231116T173000
DTEND;TZID=Europe/London:20231116T183000
DTSTAMP:20260729T051450
CREATED:20231028T140449Z
LAST-MODIFIED:20231028T140449Z
UID:7732-1700155800-1700159400@pnhuk.org
SUMMARY:Webinar on Everyday Mindfulness
DESCRIPTION:Register for a webinar on”Everyday Mindfulness” on Thursday 16th November\, 17.30 – 18.30 delivered by Lesley Howells\, Clinical Psychologist.\n\nEvery day mindfulness strategies to quieten the busyness of our minds and help us live a more meaningful life despite the challenges we face. This webinar is also a taster for the eight week Mindfulness Courses that the Better Together project run for our communities.\n\nRegister here
URL:https://pnhuk.org/event/webinar-on-everyday-mindfulness/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2023/10/balance-2686214_1280-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230928T190000
DTEND;TZID=Europe/London:20230928T210000
DTSTAMP:20260729T051450
CREATED:20230804T112723Z
LAST-MODIFIED:20230804T131519Z
UID:7698-1695927600-1695934800@pnhuk.org
SUMMARY:Mindfulness Course (8 weeks online) - from 28 September\, 7pm to 9pm
DESCRIPTION:If you’re living with a condition and being supported by any of the charities listed below\, whether you have it yourself or you’re supporting a close family member\, you will likely be dealing with a lot of stress and uncertainty. Brought to you as part of the Better Together Alliance Project\, this course is designed to help you to deal with the emotional burden of living with these conditions.  \n \nMindfulness helps us find calm\, even when we feel overwhelmed\, it helps us create clarifying and compassionate pauses for our minds. \nThis course is designed to help you to deal with the emotional burden of living with this condition. \nJoin our eight-week course taught online from 28th September\, 7-9pm. \nSession dates\nPlease add these dates to your diary! You will receive an email the day before each session as a reminder\, with the Zoom link. \n\n28th September 2023 – 7pm-9pm\n5th October 2023 – 7pm-9pm\n12th October 2020 – NO SESSION\n19th October 2023 – 7pm-9pm\n26th October 2023 – 7pm-9pm\n2nd November 2023 – 7pm-9pm\n9th November 2023 – NO SESSION\n16th November 2023 – 7pm-9pm\n23rd November 2023 – 7pm-9pm\n30th November 2023 – 7pm-9pm\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  \nFor more information and to register\, click here
URL:https://pnhuk.org/event/register-for-8-week-online-mindfulness-course-from-28-september-7pm-to-9pm/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2023/08/Twitter-PNH.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230923T110000
DTEND;TZID=Europe/London:20230923T130000
DTSTAMP:20260729T051450
CREATED:20230904T201159Z
LAST-MODIFIED:20230904T201159Z
UID:7716-1695466800-1695474000@pnhuk.org
SUMMARY:Cheshire PNH Patient and Family Meeting - Saturday 23 September 2023
DESCRIPTION:Join patients and family members for a face-to-face get together at Bents Garden Centre Warrington Road\, Glazebury\, Warrington\, Cheshire\, WA3 5NT on Saturday 23 September 2023 at 11am. \nSue and Colin Coles will be at the entrance to direct you to the right coffee place if needed. Partners\, carers or family welcome too.
URL:https://pnhuk.org/event/cheshire-pnh-patient-and-family-meeting-saturday-23-september-2023/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2023/09/coffee-1580595_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230912T070000
DTEND;TZID=Europe/London:20230912T200000
DTSTAMP:20260729T051450
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/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2023/08/Untitled-design-62.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230902T110000
DTEND;TZID=Europe/London:20230902T130000
DTSTAMP:20260729T051450
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/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230727T183000
DTEND;TZID=Europe/London:20230727T193000
DTSTAMP:20260729T051450
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:20260729T051450
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:20260729T051450
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:20260729T051450
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/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230531T163000
DTEND;TZID=Europe/London:20230531T180000
DTSTAMP:20260729T051450
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:20260729T051450
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:20260729T051450
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:20260729T051450
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:20260729T051450
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:20260729T051450
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:20260729T051450
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:20260729T051450
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:20260729T051450
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:20260729T051450
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/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20221217T103000
DTEND;TZID=UTC:20221217T120000
DTSTAMP:20260729T051450
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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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20221214T163000
DTEND;TZID=Europe/London:20221214T180000
DTSTAMP:20260729T051450
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/
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