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DTSTART;TZID=Europe/London:20250120T120000
DTEND;TZID=Europe/London:20250120T133000
DTSTAMP:20260728T221953
CREATED:20241129T145455Z
LAST-MODIFIED:20241204T105514Z
UID:8045-1737374400-1737379800@pnhuk.org
SUMMARY:Managing Stress and Uncertainty Short Online 3 Week Course - starts 20 Jan 2025 - 12pm to 1.30pm
DESCRIPTION:Brought to you as part of the Better Together Alliance Project (of which PNH Support is a member)\, this course is designed to help you to deal with the emotional burden of living with these conditions. This shortened course will help you learn techniques to help you face the challenges of living with bone marrow failure. There are three weekly sessions each with 60 minutes of psycho-educational content and 30 minutes of meditation/reflective practice. The course uses ACT\, an evidence-based therapeutic approach\, that people say makes immediate sense. 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.\nTo join the course\, you will need access to the internet to join the 3 Zoom sessions (dates below). Ideally you will also need WhatsApp\, to join the discussion group and keep in contact with your tutor. We will add you to the WhatsApp group using the number you provide when you register.\n\nSession datesMonday 20th January 2025 at 12noon to 1.30pmMonday 27th January 2025 at 12noon to 1.30pmMonday 3rd February 2025 at 12noon to 1.30pm\n\nFor more info or to register see here
URL:https://pnhuk.org/event/managing-stress-and-uncertainty-short-online-3-week-course/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2024/11/mood-7529903_1280.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250116T183000
DTEND;TZID=Europe/London:20250116T203000
DTSTAMP:20260728T221953
CREATED:20241129T145208Z
LAST-MODIFIED:20241220T142254Z
UID:8043-1737052200-1737059400@pnhuk.org
SUMMARY:Moving Forward\, Living the Life that Matters to You - 8 Week Online Course - starts 16 Jan 2025
DESCRIPTION:Co-created by members of the 6 Better Together charities including PNH Support\, this course is designed to help you move beyond diagnosis and treatment\, and into the life that matters to you.\nWhat does this course involve? Living 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 – to help you overcome these hurdles and thrive in the ways you wish.\nTo join the course\, you will need access to the internet to join the 7 Zoom sessions (dates below). Ideally you will also need WhatsApp\, to join the discussion group and keep in contact with your tutor.\n\nSession dates:Thursday 16th January 2025 at 6.30pmThursday 23rd January 2025 at 6.30pmThursday 30th January 2025 at 6.30pmThursday 6th February 2025 at 6.30pmThursday 13th February 2025 at 6.30pmThursday 20th February 2025 at 6.30pmThursday 27th February 2025 at 6.30pm\n\nFor more information and to register see here
URL:https://pnhuk.org/event/moving-forward-living-the-life-that-matters-to-you-8-week-online-course/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2024/11/tree-of-life-7356781_1280.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250116T183000
DTEND;TZID=Europe/London:20250116T203000
DTSTAMP:20260728T221953
CREATED:20241129T144822Z
LAST-MODIFIED:20241204T105104Z
UID:8037-1737052200-1737059400@pnhuk.org
SUMMARY:Mindfulness for Stress Taster Session - 16 January 2025 - 6.30pm to 8.30pm
DESCRIPTION:Join experienced and accredited mindfulness teacher Steve Smith in this one-off taster session to learn a little more about what mindfulness is and how it can help you. \nWe can’t always choose what happens to us in life\, but we can pause to choose how we wish to respond.  \nIt 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.  \nWe all know pausing isn’t simple. Thoughts\, emotions\, and physical sensations in our bodies are very powerful. So quickly we can find ourselves swept away in a torrent of fears\, worries\, uncertainty\, despair\, anger\, irritation\, guilt\, frustration…. Often prompting us to act in ways that just add to the problem.\n \nThere are creative and imaginative ways of settling the busyness of our minds to find the clear space to choose how we want to respond to whatever life brings us\, in our everyday or when going through particularly stressful times\, and one way is through Mindfulness. \nMindfulness helps us find an extra energizing dimension to our lives\, even when we feel overwhelmed\, it helps us create clarifying and compassionate pauses for our minds to settle so moment by moment we can choose to be the person that matters to us. \n\n\nFor more information and to register\, see here
URL:https://pnhuk.org/event/mindfulness-for-stress-taster-session/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2024/11/ai-generated-8986866_1280.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20241207T123000
DTEND;TZID=Europe/London:20241207T143000
DTSTAMP:20260728T221953
CREATED:20240416T093129Z
LAST-MODIFIED:20240416T093129Z
UID:7902-1733574600-1733581800@pnhuk.org
SUMMARY:East Anglia Patient and Family Christmas Lunch - 7 December 2024
DESCRIPTION:Join PNH patients and family members for a relaxed Christmas lunch. Cost and venue to be confirmed.
URL:https://pnhuk.org/event/east-anglia-patient-and-family-christmas-lunch-7-december-2024/
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:20241207T110000
DTEND;TZID=Europe/London:20241207T123000
DTSTAMP:20260728T221953
CREATED:20240702T123541Z
LAST-MODIFIED:20240702T123541Z
UID:7975-1733569200-1733574600@pnhuk.org
SUMMARY:London PNH Patient & Family Meeting - Saturday 7 December 2024
DESCRIPTION:Join other PNH patients and family members face-to-face at an informal meeting over coffee.Where: Atrium Cafe (ground floor)\, National Theatre\, London\, SE1 9PX. For more information on getting here\, please see here.Time: 11am to 12.30pmDate: Saturday 7 December 2024All welcomePlease email contact@pnhuk.org with any quesitons. \nSee less
URL:https://pnhuk.org/event/london-pnh-patient-family-meeting-saturday-7-december-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:20241109T103000
DTEND;TZID=Europe/London:20241109T120000
DTSTAMP:20260728T221953
CREATED:20240629T150333Z
LAST-MODIFIED:20240629T150333Z
UID:7958-1731148200-1731153600@pnhuk.org
SUMMARY:PNH Patient/Family online meeting - 9 November 2024
DESCRIPTION:Join other PNH patients/ family members for an informal chat via Zoom. Please note that no medical advice will be provided but signposting can be provided if needed. All welcome!\nDate: Saturday 9 November 2024\nTime: 10.30am to 12pm\n\nPlease email contact@pnhuk.org for the Zoom details. Please also let us know if you need help using Zoom
URL:https://pnhuk.org/event/pnh-patient-family-online-meeting-9-november-2024/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2024/06/video-conference-5363856_1280.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20241104T120000
DTEND;TZID=Europe/London:20241104T133000
DTSTAMP:20260728T221953
CREATED:20241012T120901Z
LAST-MODIFIED:20241012T120901Z
UID:8014-1730721600-1730727000@pnhuk.org
SUMMARY:Moving Forward - Living the Life that Matters to you - Online Course - from 4 November
DESCRIPTION:If you’re living with PNH or you’re supporting a close family member\, it can be challenging to think about how to move forward following significant treatment\, or when treatment is life-long. Co-created by members of the 6 charities listed below\, this online course is designed to help you move beyond diagnosis and treatment\, and into the life that matters to you.\n\nZoom session dates and timesMonday 4th November 2024\, 12pm – 1.30pmMonday 11th November 2024\, 12pm – 1.30pmMonday 18th November 2024\, 12pm – 1.30pmMonday 25th November 2024\, 12pm – 1.30pmMonday 2nd December 2024\, 12pm – 1.30pmMonday 9th December 2024\, 12pm – 1.30pmMonday 16th December 2024\, 12pm – 1.30pm\n\nFor more information and to register click here\n\nThis course is part of the Better Together project funded by the National Lottery Community Fund.
URL:https://pnhuk.org/event/moving-forward-living-the-life-that-matters-to-you-online-course-from-4-november/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2024/10/Moving-forward-general-PNH-support-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20241026T160000
DTEND;TZID=Europe/London:20241026T180000
DTSTAMP:20260728T221953
CREATED:20241012T120033Z
LAST-MODIFIED:20241012T120033Z
UID:8011-1729958400-1729965600@pnhuk.org
SUMMARY:18 to 30's PNH Patient Meeting (London) - 26 October 2024
DESCRIPTION:A fellow PNH patient and PNH Support UK member is hosting an informal meet up for younger PNH patients (approx 18 to approx 30 years)!\nDate: Saturday\, 26th of October 2024Time: 4-6 pm.Venue: National Theatre Cafe (Ground floor) on the South Bank in London\, SE1 9PX – nearest station is Waterloo (train and tube) – If you have a question or want more information please email us on contact@pnhuk.org.
URL:https://pnhuk.org/event/18-to-30s-pnh-patient-meeting-london-26-october-2024/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2024/10/chair-circle-7476556_1280.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20241012T140000
DTEND;TZID=Europe/London:20241012T160000
DTSTAMP:20260728T221953
CREATED:20240626T110856Z
LAST-MODIFIED:20240626T111154Z
UID:7950-1728741600-1728748800@pnhuk.org
SUMMARY:Community Coffee Afternoons - 12 October 2024 - 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 12th October in Edinburgh\, London\, Birmingham or Leeds and chat with other people affected by rare conditions affecting the blood. \nVenues: \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  \nOur partner charities and funder: \n 
URL:https://pnhuk.org/event/community-coffee-afternoons-12-october-2024-2pm-to-4pm/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2024/06/13.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240926T090000
DTEND;TZID=Europe/London:20240926T113000
DTSTAMP:20260728T221953
CREATED:20240721T145525Z
LAST-MODIFIED:20240814T193506Z
UID:7983-1727341200-1727350200@pnhuk.org
SUMMARY:Managing Stress and Uncertainty Online 6 Week Course - 26 September 2024
DESCRIPTION:Managing Stress and Uncertainty Online 6 Week Course\n\n\nThis course is made available to our members through the National Lottery funded project called “Better Together” and it is part of the emotional wellbeing offering which is part of this project.\n“I became so much more confident…you feel that you are valid and it is normal to feel in a certain way.” – attendee on past course\nThis 6 week course starting on 26th September from 9am to 11.30am\, will help you learn techniques to help you face the challenges of living with a rare condition.\nFor more information and to register click here: https://www.theaat.org.uk/…/managing-stress-and…
URL:https://pnhuk.org/event/managing-stress-and-uncertainty-online-6-week-course-2/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2024/06/yacht-3204310_1280.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240910T100000
DTEND;TZID=Europe/London:20240910T120000
DTSTAMP:20260728T221953
CREATED:20240626T103523Z
LAST-MODIFIED:20240721T145221Z
UID:7937-1725962400-1725969600@pnhuk.org
SUMMARY:Mindfulness 8 Week Online Course - starts 10 September 2024
DESCRIPTION:Mindfulness for Stress Online Course\n\nThis course is offered as part of a National Lottery funded project called “Better Together” as part of the emotional wellbeing support offering\,\n“It has helped me to look at things in a different way\, to sleep better and to stress less.” – attendee on past course\nLearn how to find the clear space in your mind to choose how you want to respond to whatever life brings. Join Psychologist Steven Smith for this 8 week Mindfulness for Stress Course\, starting on 10th September.\nNot sure if this course for you? Join the taster session on 23rd July.\n\nTo find out more and to register click here: http://www.theaat.org.uk/…/mindfulness-for-stress…\n 
URL:https://pnhuk.org/event/mindfulness-8-week-online-course-starts-27-september-2024/
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:20240907T103000
DTEND;TZID=Europe/London:20240907T120000
DTSTAMP:20260728T221953
CREATED:20240416T092907Z
LAST-MODIFIED:20240416T092907Z
UID:7900-1725705000-1725710400@pnhuk.org
SUMMARY:East Anglia Patient and Family Meeting - Saturday 7 September
DESCRIPTION:Join PNH patients and family members for an informal chat over coffee and cake. Please note that you will need to pay for your own refreshments.\nThe event will be held at Bury Lane Farm Shop café\, A10 By Pass\, Melbourn\, Royston\, Herts\, SG8 6DF\nTime: 10.30am to 12pm
URL:https://pnhuk.org/event/east-anglia-patient-and-family-meeting-saturday-7-september/
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2022/06/beer-garden-4465321_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240817T100000
DTEND;TZID=Europe/London:20240817T113000
DTSTAMP:20260728T221953
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:20260728T221953
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:20260728T221953
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:20260728T221953
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:20260728T221953
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:20260728T221953
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:20260728T221953
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:20260728T221953
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:20260728T221953
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240413T110000
DTEND;TZID=Europe/London:20240413T123000
DTSTAMP:20260728T221953
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240411T170000
DTEND;TZID=Europe/London:20240411T180000
DTSTAMP:20260728T221953
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240331T080000
DTEND;TZID=Europe/London:20240331T170000
DTSTAMP:20260728T221953
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240309T103000
DTEND;TZID=Europe/London:20240309T120000
DTSTAMP:20260728T221953
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240229T130000
DTEND;TZID=Europe/London:20240229T134500
DTSTAMP:20260728T221953
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/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240227T190000
DTEND;TZID=Europe/London:20240227T203000
DTSTAMP:20260728T221953
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240125T183000
DTEND;TZID=Europe/London:20240125T200000
DTSTAMP:20260728T221953
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240125T170000
DTEND;TZID=Europe/London:20240125T180000
DTSTAMP:20260728T221953
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240118T183000
DTEND;TZID=Europe/London:20240118T193000
DTSTAMP:20260728T221953
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/
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