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X-WR-CALDESC:Events for PNH Support
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DTSTART;TZID=Europe/London:20231202T103000
DTEND;TZID=Europe/London:20231202T120000
DTSTAMP:20260804T024452
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/
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DTSTART;TZID=Europe/London:20231202T110000
DTEND;TZID=Europe/London:20231202T130000
DTSTAMP:20260804T024452
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/
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DTSTART;TZID=Europe/London:20231209T100000
DTEND;TZID=Europe/London:20231209T110000
DTSTAMP:20260804T024452
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/
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