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X-WR-CALDESC:Events for PNH Support
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DTSTART;TZID=Europe/London:20240817T100000
DTEND;TZID=Europe/London:20240817T113000
DTSTAMP:20260728T232727
CREATED:20240512T165226Z
LAST-MODIFIED:20240512T165226Z
UID:7907-1723888800-1723894200@pnhuk.org
SUMMARY:PNH Support Annual General Meeting for members - 17 August 2024
DESCRIPTION:PNH Support’s AGM will be held on Saturday 17 August 2024 at 10am via Zoom. We are required by our constitution to have this meeting at which we present the annual report and accounts which are then submitted to the Charities Commission. Only official members of PNH Support are entitled to attend the AGM. \nMembership is free and means we can contact you direct about news\, events and opportunities. To be a member you have to have signed up through our membership form and provided us with some details we have to collect from you here: https://pnhuk.org/about-pnh-support/membership/. \nIf you are a PNH patient/carer and are not currently a member of PNH Support and want to attend the AGM\, just sign up using the link above. We will be sending out the papers and Zoom link for the AGM to members in due course. Please email contact@pnhuk.org with any questions or if you are not sure whether you are a member or not.
URL:https://pnhuk.org/event/pnh-support-annual-general-meeting-for-members-17-august-2024/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2024/05/chairs-2181960_1280.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240723T100000
DTEND;TZID=Europe/London:20240723T113000
DTSTAMP:20260728T232727
CREATED:20240626T103113Z
LAST-MODIFIED:20240629T145812Z
UID:7933-1721728800-1721734200@pnhuk.org
SUMMARY:Mindfulness Taster Session - 23 July 2024
DESCRIPTION:Is mindfulness for you? Join Psychologist Steven Smith for this taster session of the “Mindfulness for Stress 8 week online course which is coming up in September (details still being finalised) \n“I feel more in control of what my illness throws at me” – attendee on previous Mindfulness for Stress course. \n  \nTo register please click here \n 
URL:https://pnhuk.org/event/mindfulness-taster-session-23-july-2024/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2024/06/Mindfullness-PNH.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240720T140000
DTEND;TZID=Europe/London:20240720T160000
DTSTAMP:20260728T232727
CREATED:20240626T110540Z
LAST-MODIFIED:20240626T111355Z
UID:7947-1721484000-1721491200@pnhuk.org
SUMMARY:Community Coffee Afternoons - 20 July - 2pm to 4pm
DESCRIPTION:Sick of always having to explain your condition? Join others living with rare haematological conditions from our “Better Together” project partner charities (listed below) for a cuppa on Saturday 20th July in Edinburgh\, London\, Birmingham or Leeds and chat with other people affected by rare conditions affecting the blood. \nVenues and sign up links: \nLondon – Basement Bar\, Drake and Morgans\, 6 Pancras Square\, London N1C 4AG \nBirmingham – The Exchange\, 3 Centenary Square\, Birmingham B1 2DR \nLeeds – Banyan Bar\, 2 City Square\, Leeds LS1 2ES \nEdinburgh  -The Towpath Cafe\, Upstairs @ Biketrax\, 2 Fountainbridge Square\, Edinburgh\, EH3 9QB \n  \n  \n  \nOur partner charities and funder: \n 
URL:https://pnhuk.org/event/community-coffee-afternoons-20-july-2pm-to-4pm/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2024/06/13.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240627T120000
DTEND;TZID=Europe/London:20240627T130000
DTSTAMP:20260728T232727
CREATED:20240518T120459Z
LAST-MODIFIED:20240626T104016Z
UID:7915-1719489600-1719493200@pnhuk.org
SUMMARY:Webinar: Family Life Cycles\, Times of Transition in the Context of Illness
DESCRIPTION:Family Life Cycles\, Times of Transition in the Context of Illness Webinar\n27th June 12pm to 1pm\n\nTransition points in families\, such as children becoming more independent can leave the family in a state of uncertainty and worry\, especially when you have to navigate a serious health condition. Life cycle changes are inevitable. Being prepared for them is not and they affect all of us differently. We are bringing you this webinar hosted by family therapist Amy Beadle\, to think about the challenges of life cycle changes in the context of illness.\n\nREGISTER HERE\nAll Emotional Wellbeing Support events supported by the National Lottery Community Fund are here
URL:https://pnhuk.org/event/webinar-family-life-cycles-times-of-transition-in-the-context-of-illness/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2024/05/tree-of-life-7356781_1280.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240617T130000
DTEND;TZID=Europe/London:20240617T143000
DTSTAMP:20260728T232727
CREATED:20240518T120719Z
LAST-MODIFIED:20240518T120719Z
UID:7918-1718629200-1718634600@pnhuk.org
SUMMARY:Moving Forward 7 Week Online Course
DESCRIPTION:Moving Forward 7 Week Online Course\n\nStarting 17th June at 1pm-2.30pm\n\nLiving the life that matters to us is key to everyone’s emotional wellbeing. But following significant treatment or when treatment is life long\, this isn’t always easy. People are faced with physical\, psychological and practical hurdles that at first feel unsurmountable. This course is designed – with the help of people living with PNH – to help you overcome these hurdles and thrive in the ways you wish.\n\nSESSION DATES AND TIMESMonday 17th June 2024\, 1pm – 2.30pmMonday 24th June 2024\, 1pm – 2.30pmMonday 1st July 2024\, 1pm – 2.30pmMonday 8th July 2024\, 1pm – 2.30pmMonday 15th July 2024\, 1pm – 2.30pmMonday 22nd July 2024\, 1pm – 2.30pmMonday 29th July 2024\, 1pm – 2.30pm\n\nFOR MORE INFORMATION AND TO REGISTERhttps://www.theaat.org.uk/…/moving-forward-living-the…
URL:https://pnhuk.org/event/moving-forward-7-week-online-course/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2024/05/Moving-forward-general-PNH-support-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240611T093000
DTEND;TZID=Europe/London:20240611T110000
DTSTAMP:20260728T232727
CREATED:20240518T120156Z
LAST-MODIFIED:20240518T120156Z
UID:7912-1718098200-1718103600@pnhuk.org
SUMMARY:Managing Stress and Uncertainty Online 6 Week Course
DESCRIPTION:Managing Stress and Uncertainty Online 6 Week Course\n\nThis is a 6 week online course starting during the day on 11th June\nThis course will help you learn techniques to help you face the challenges of living with PNH.\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.\n\nSESSION DATES AND TIMESTuesday 11th June\, 9.30-11amTuesday 18th June\, 9.30-11amTuesday 25th June 9.30-11amTuesday 2nd July\, 9.30-11amTuesday 9th July\, 9.30-11amTuesday 16th July\, 9.30-11am\n\nFOR MORE INFORMATION AND TO REGISTER CLICK HERE\n\nAll Emotional Wellbeing Support events supported by the National Lottery Community Fund are here
URL:https://pnhuk.org/event/managing-stress-and-uncertainty-online-6-week-course/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2024/05/Managing-Stress-PNH.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240603T180000
DTEND;TZID=Europe/London:20240603T193000
DTSTAMP:20260728T232727
CREATED:20240518T120921Z
LAST-MODIFIED:20240518T121022Z
UID:7921-1717437600-1717443000@pnhuk.org
SUMMARY:Managing Stress and Uncertainty Online 6 Week Evening Course
DESCRIPTION:Managing Stress and Uncertainty Course\n\nThis is a 6 week online evening course starting 3rd June\n\nThis course will help you learn techniques to help you face the challenges of living with PNH.\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.\n\nSession dates and times:Monday 3rd June 2024 – 6pm – 7.30pmMonday 10th June 2024 – 6pm – 7.30pmMonday 17th June 2024 – 6pm – 7.30pmMonday 24th June 2024 – 6pm – 7.30pmMonday 1st July 2024 – 6pm – 7.30pmMonday 8th July 2024 – 6pm – 7.30pm\n\nTO FIND OUT MORE OR REGISTER CLICK HERE
URL:https://pnhuk.org/event/managing-stress-and-uncertainty-online-6-week-evening-course/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2024/05/Managing-Stress-PNH-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240511T103000
DTEND;TZID=Europe/London:20240511T120000
DTSTAMP:20260728T232727
CREATED:20240416T092620Z
LAST-MODIFIED:20240416T092620Z
UID:7898-1715423400-1715428800@pnhuk.org
SUMMARY:East Anglia Patient & Family Meeting - 11 May 2024 via Zoom
DESCRIPTION:Join PNH patients and family members online for an informal chat. Bring your own refreshments!\nZoom meeting details: email contact@pnhuk.org
URL:https://pnhuk.org/event/east-anglia-patient-family-meeting-11-may-2024-via-zoom/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2023/09/coffee-1580595_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240502T183000
DTEND;TZID=Europe/London:20240502T200000
DTSTAMP:20260728T232727
CREATED:20240405T103237Z
LAST-MODIFIED:20240405T103237Z
UID:7891-1714674600-1714680000@pnhuk.org
SUMMARY:Moving Forward - Free Online Course - starts 2 May
DESCRIPTION:Moving Forward Course: Living the life that matters to you\n\nThis free online 7 week course is designed to help you move beyond diagnosis and treatment\, and into the life that matters to you.\n\nLiving the life that matters to us is key to everyone’s emotional wellbeing. But following significant treatment or when treatment is life long\, this isn’t always easy. People are faced with physical\, psychological and practical hurdles that at first feel unsurmountable. This course is designed – with the help of people with bone marrow conditions including PNH – to help you overcome these hurdles and thrive in the ways you wish.\n\nFor more information and to register see here. 
URL:https://pnhuk.org/event/moving-forward-free-online-course-starts-2-may/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2024/04/legs-2635038_1280.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240413T110000
DTEND;TZID=Europe/London:20240413T123000
DTSTAMP:20260728T232727
CREATED:20240122T110953Z
LAST-MODIFIED:20240322T154329Z
UID:7854-1713006000-1713011400@pnhuk.org
SUMMARY:London PNH Patient and Family Meeting - Saturday 13 April 2024 (note change of venue)
DESCRIPTION:Join other PNH patients and family members face-to-face at an informal meeting over coffee.\n\nWhere: Atrium Cafe\, National Theatre\, London\, SE1 9PX (this is very close to the previous venue at the Hayward Gallery)\nTime: 11am to 12.30pm\nDate: Saturday 13 April 2024\nAll welcome\nPlease email contact@pnhuk.org with any quesitons.
URL:https://pnhuk.org/event/london-pnh-patient-and-family-meeting-saturday-13-april-2024/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2024/01/tower-bridge-5727975_1280.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240411T170000
DTEND;TZID=Europe/London:20240411T180000
DTSTAMP:20260728T232727
CREATED:20240322T153251Z
LAST-MODIFIED:20240322T153302Z
UID:7884-1712854800-1712858400@pnhuk.org
SUMMARY:Webinar on Wellbeing for Carers - 11 April - 5pm to 6pm
DESCRIPTION:A challenge faced by many who care for someone living with PNH\, is taking time to care for themselves. This webinar offers parents and carers\, (who often do not take the time to care for themselves) tools to support themselves while caring for the people they love. \n  \nRegister here
URL:https://pnhuk.org/event/webinar-for-wellbeing-for-carers-11-april-5pm-to-6pm/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2024/03/together-2408616_1280.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240331T080000
DTEND;TZID=Europe/London:20240331T170000
DTSTAMP:20260728T232727
CREATED:20240203T143723Z
LAST-MODIFIED:20240203T143820Z
UID:7869-1711872000-1711904400@pnhuk.org
SUMMARY:Super Rare Campaign 2024 -1 February to 31 March 2024
DESCRIPTION:Welcome to Super Rare! Super Rare is all about being rare\, but not alone. Our charities designed this campaign together to help people affected by Super Rare conditions to come together as a community. So sign up for an event\, organise one\, or order your pack now to start planning how you can get involved during February and March and earn your t-shirt! \nFind out more here \n 
URL:https://pnhuk.org/event/super-rare-campaign-2024-1-february-to-31-march-2024/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2024/02/Email-or-web-header-PNH-Loneliness.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240309T103000
DTEND;TZID=Europe/London:20240309T120000
DTSTAMP:20260728T232727
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:20260728T232727
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:20260728T232727
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:20260728T232727
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:20260728T232727
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:20260728T232727
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:20260728T232727
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:20260728T232727
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:20260728T232727
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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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20231116T173000
DTEND;TZID=Europe/London:20231116T183000
DTSTAMP:20260728T232727
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/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230928T190000
DTEND;TZID=Europe/London:20230928T210000
DTSTAMP:20260728T232727
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230923T110000
DTEND;TZID=Europe/London:20230923T130000
DTSTAMP:20260728T232727
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230912T070000
DTEND;TZID=Europe/London:20230912T200000
DTSTAMP:20260728T232727
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:20260728T232727
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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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230727T183000
DTEND;TZID=Europe/London:20230727T193000
DTSTAMP:20260728T232727
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230701T100000
DTEND;TZID=Europe/London:20230701T120000
DTSTAMP:20260728T232727
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/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230628T190000
DTEND;TZID=Europe/London:20230628T210000
DTSTAMP:20260728T232727
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/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230622T173000
DTEND;TZID=Europe/London:20230622T183000
DTSTAMP:20260728T232727
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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