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DTSTART;TZID=Europe/London:20250428T120000
DTEND;TZID=Europe/London:20250428T130000
DTSTAMP:20260728T212544
CREATED:20250407T105700Z
LAST-MODIFIED:20250407T105700Z
UID:8232-1745841600-1745845200@pnhuk.org
SUMMARY:How do I keep emotionally healthy?
DESCRIPTION:Themes in this webinar will include how to keep yourself emotionally healthy so that you can be there for your child and the rest of your family.\nSign up here.
URL:https://pnhuk.org/event/how-do-i-keep-emotionally-healthy/
LOCATION:Herts\, SG8 6DF
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250315T103000
DTEND;TZID=Europe/London:20250315T120000
DTSTAMP:20260728T212544
CREATED:20240416T093318Z
LAST-MODIFIED:20240416T093318Z
UID:7904-1742034600-1742040000@pnhuk.org
SUMMARY:East Anglia Patient and Family Meeting - 15 March 2025
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 full address of the venue is 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-15-march-2025/
LOCATION:Herts\, SG8 6DF
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2022/04/coffee-g5c9910f10_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250301T110000
DTEND;TZID=Europe/London:20250301T153000
DTSTAMP:20260728T212544
CREATED:20250120T205846Z
LAST-MODIFIED:20250228T170029Z
UID:8083-1740826800-1740843000@pnhuk.org
SUMMARY:East London Epping Forest Super Rare Walk 2025  - 1 March 2025
DESCRIPTION:On Saturday 1 March 2025\, we will be coming together to walk in Epping Forest in support of the Super Rare campaign and PNH Support. This year is the 10 year anniversary of PNH Support which is run voluntarily by patients\, for patients!  \nWe’ll walk to High Beach in Epping Forest for lunch where you can opt to either taxi back to Chingford station (or wherever your car is parked) or join us for the walk back. Dogs and children are welcome.  If you have very young kids\, you could join us at a car park half-way to the pub (or at the pub) for a short walk option.    \nWe will meet at 11am at Bury Road Car Park\, 5 minutes walk from Chingford Station (Station Road\, Chingford\, Greater London E4 6AL) and where we will start the walk and arrive at High Beach in Epping Forest for lunch. After lunch we’ll walk back to Bury Road Car Park.  \nThere are free public toilets at High Beach.  \nWalk  \nThe route for the walk is from Chingford to High Beach in Epping Forest and is approximately 1 to 1.5 hour’s walk each way (4.1 km or 2.5 miles each way) but this will of course depend on how fast you walk.  This map is an approximation but indicates the route we will take  https://maps.app.goo.gl/RKayv3CMF5ZtbsMC8  \n \nThe route is quite flat with a medium uphill gradient as we approach High Beach. It can get muddy so sensible footwear are recommended.    \nAfter lunch we will walk back to Chingford station but if you only wanted to do a short walk\, you could take a 10 minute taxi back to Chingford station or your car.   \n If you walk there and back and stop for lunch\, we estimate we will be back at Chingford at approximately 3 to 3.30pm.  \n Donate  \nPlease make a donation on our JustGiving page to support people living with PNH.   \n Food  \nAt High Beach (the destination for the walk and where we will stop for lunch) there is the following options for food:  \n\nA gastropub: The Kings Oak Hotel Paul’s Nursery Road\, High Beach\, Essex. IG10 4AE with a wide variety of food options and both indoor and outdoor seating. Let us know if you want to eat here by completing the form below so we can book a table (probably outside). The pub is not dog friendly so those with furry friends will need to eat outside. \n\n\nThe Oyster Shack & Seafood Bar next to the pub which doesn’t take reservations and has a few indoor tables and outdoor seating. Serves hot and cold seafood. \n\n\nThe Kings Oak Cafe is also next the pub\, is a takeaway cafe and has outdoor seating. They sell both cold and hot drinks\, sandwiches and burgers (including vegetarian and vegan)\, hot dogs and chips. \n\nTravelling by Train:  \n\nChingford Station\, Station Road\, Chingford\, E4 6AL. This station is at the end of the “Weaver Line” on the Overground (map here). The walk starts 5 minutes walk from Chingford Station at the Bury Road Car Park. \n\nParking  \nChingford (where the walk starts)  \n\nBury Road Car Park\, Parking lot\, 4 Bury Rd\, London E4 7QJ (run by Horizon Parking Ltd for the City of London Corporation\, Epping Forest) – 4 mins walk from Chingford Station and right at the start of the walk. Pay by RingGo app or call 0207 7110 0000 Tariff: \n\n\n\n\nUp to an hour £1.50 \n\n\n\n\n\n\nUp to 2 hours £2.50 \n\n\n\n\n\n\nUp to 4 hours £4 \n\n\n\n\n\n\nUp to 6 hours £6 \n\n\n\n\nChingford Golf Course Car Park\, Bury Rd\, London E4 6AR (next to the Bury Road Car Park and 5 mins walk from Chingford Station). It has the same tariff and payment methods as Bury Road Car Park. \n\nHigh Beach (our destination and where we will stop for lunch. If anyone wants to meet us there or only walk some of the way they could can park here):  \n\nPillow Mounds Car Park\, Rushey Pln\, Waltham Abbey\, Loughton IG10 4AE (run by Horizon Parking Ltd for the City of London Corporation\, Epping Forest) – opposite the pub. Pay by RingGo app or call 0207 7110 0000\nTariff: \n\n\n\n\nUp to an hour £1.50 \n\n\n\n\n\n\nUp to 2 hours £2.50 \n\n\n\n\n\n\nUp to 4 hours £4 \n\n\n\n\n\n\nUp to 6 hours £6 \n\n\n\n\nHigh Beach Visitor Centre Carpark (only has 12 carparks)\, High Beech\, Waltham Abbey\, Loughton IG10 4AE (behind the pub next to the visitor’s centre)\, It has the same tariff and payment methods as Pillow Mounds Car Park. \n\n  \n \nThis is one of our trustees\, Andy having a great time on a Super Rare walk. \nRSVP  \nPlease RSVP to let us know you are joining the walk using this short form so we know who is coming and whether we should a book to eat at the pub. \nEveryone is welcome to come\, whether you are friends\, family\, locals\, or people who have experience of a super rare condition like PNH.  \n  \n 
URL:https://pnhuk.org/event/east-london-epping-forest-super-rare-walk-2025-1-march-2025/
LOCATION:Herts\, SG8 6DF
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:20250227T120000
DTEND;TZID=Europe/London:20250227T130000
DTSTAMP:20260728T212544
CREATED:20250225T152348Z
LAST-MODIFIED:20250225T152348Z
UID:8146-1740657600-1740661200@pnhuk.org
SUMMARY:Emotional Wellbeing
DESCRIPTION:How do I manage times of change in my child’s life? This webinar will help you and your child cope with the practical and emotional demands of life transition and find balance between keeping your child safe and helping them become more independent. \nhttps://www.theaat.org.uk/Event/webinar-how-do-i-manage-times-of-change-in-my-childs-life \ninar-how-do-i-manage-times-of-change-in-my-childs-life
URL:https://pnhuk.org/event/emotional-wellbeing/
LOCATION:Herts\, SG8 6DF
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250224T180000
DTEND;TZID=Europe/London:20250224T190000
DTSTAMP:20260728T212544
CREATED:20250221T123550Z
LAST-MODIFIED:20250221T123551Z
UID:8138-1740420000-1740423600@pnhuk.org
SUMMARY:Living Well with Aplastic Anaemia – 24th February\, 6pm
DESCRIPTION:Our charity partners The Aplastic Anaemia Trust are hosting a webinar and you are invited to join.\n\nThis webinar focused on living well with Aplastic Anaemia. This session will offer practical strategies for cultivating resilience and well-being while navigating the emotional and psychological challenges of an Aplastic Anaemia diagnosis.\n\nSign up here.
URL:https://pnhuk.org/event/living-well-with-aplastic-anaemia-24th-february-6pm/
LOCATION:Herts\, SG8 6DF
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2025/02/Untitled-design-46-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250220T120000
DTEND;TZID=Europe/London:20250220T130000
DTSTAMP:20260728T212544
CREATED:20250120T212344Z
LAST-MODIFIED:20250120T213112Z
UID:8092-1740052800-1740056400@pnhuk.org
SUMMARY:Webinar: Self Confidence and Advocacy - 20 February 2025
DESCRIPTION:This webinar on 20 February 2025 from 12pm to 1pm is designed to help you find the confidence to advocate for yourself or your loved one\, and the words when you need them. We will discuss strategies that help you relax in conversations or email interactions\, pausing to get across what you wish to say in a courteous but convincing and effective manner. \nRegister here
URL:https://pnhuk.org/event/webinar-self-confidence-and-advocacy-20-february-2025/
LOCATION:Herts\, SG8 6DF
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2025/01/151.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250215T103000
DTEND;TZID=Europe/London:20250215T130000
DTSTAMP:20260728T212544
CREATED:20250122T172030Z
LAST-MODIFIED:20250122T172030Z
UID:8105-1739615400-1739624400@pnhuk.org
SUMMARY:Coffee and Cake In Support of PNH Support and the AAT
DESCRIPTION:Join a coffee and cake morning with a variety of stalls including a tombola – cash only! Raising money for PNH Support and the Aplastic Anaemia Trust. \nVenue: St James’ Church\, 74D Coventry St\, Southam CV47 0EA \nTime: 10.30am to 1pm \nhttps://stjames-southam.co.uk/
URL:https://pnhuk.org/event/coffee-and-cake-in-support-of-pnh-support-and-the-aat/
LOCATION:St James Church Southam
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2025/01/coffee-8478202_1280.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250213T183000
DTEND;TZID=Europe/London:20250213T203000
DTSTAMP:20260728T212544
CREATED:20241129T145939Z
LAST-MODIFIED:20241220T142221Z
UID:8047-1739471400-1739478600@pnhuk.org
SUMMARY:Mindfulness for Stress  - Online 8 Week Course - starts 13 Feb 2025 - 6.30pm to 8.30pm
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.\n\n\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. \nSession dates: \n\nThursday 13th February – 6.30pm-8.30pm\nThursday 20th February – 6.30pm-8.30pm\nThursday 27th February – 6.30pm-8.30pm\nThursday 6th March – 6.30pm-8.30pm\nThursday 13th March – 6.30pm-8.30pm\nThursday 20th March – 6.30pm-8.30pm\nThursday 27th March – 6.30pm-8.30pm\nThursday 3rd April – 6.30pm-8.30pm\n\n  \n\n\nFor more information or to register see here
URL:https://pnhuk.org/event/mindfulness-for-stress-course/
LOCATION:Herts\, SG8 6DF
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:20250212T180000
DTEND;TZID=Europe/London:20250212T193000
DTSTAMP:20260728T212544
CREATED:20241129T150236Z
LAST-MODIFIED:20241204T105731Z
UID:8050-1739383200-1739388600@pnhuk.org
SUMMARY:Managing Stress and Uncertainty Online 6 Week Course - starts 12 Feb 2025 - 6pm to 7.30pm
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. \n  \nThis course will help you learn techniques to help you face the challenges of living with bone marrow failure. There are six 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.  \n  \nSession dates \n\nWednesday 12th February 2025 at 6pm\nWednesday 19th February 2025 at 6pm\nWednesday 26th February 2025 at 6pm\nWednesday 5th March 2025 at 6pm\nWednesday 12th March 2025 at 6pm\nWednesday 19th March 2025 at 6pm\n\nFor more information or to register see here
URL:https://pnhuk.org/event/managing-stress-and-uncertainty-online-course/
LOCATION:Herts\, SG8 6DF
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2024/11/mood-7529903_1280.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250208T100000
DTEND;TZID=Europe/London:20250208T113000
DTSTAMP:20260728T212544
CREATED:20241211T101520Z
LAST-MODIFIED:20241211T101520Z
UID:8066-1739008800-1739014200@pnhuk.org
SUMMARY:Taking Tablets Webinar - 8 February 2025 - 10am to 11.30am
DESCRIPTION:Now that there are PNH treatments available which are in tablet form (danicopan and iptacopan)\, join us to hear some advice and tips about taking tablets regularly from a patient as well as the PNH National Service who can answer any questions relating to PNH tablet treatment \n\n10am – 10.45am – presentation\n10.45am  to 11.00am – Q&A\n11.00am to 11.30am – general chat for patients/carers\n\nTo register please email us at contact@pnhuk.org
URL:https://pnhuk.org/event/taking-tablets-webinar-8-february-2025-10am-to-11-30am/
LOCATION:Herts\, SG8 6DF
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2024/12/medicines-661612_1280.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250130T120000
DTEND;TZID=Europe/London:20250130T130000
DTSTAMP:20260728T212544
CREATED:20241220T143149Z
LAST-MODIFIED:20241220T143803Z
UID:8078-1738238400-1738242000@pnhuk.org
SUMMARY:Parent and Carer Webinars
DESCRIPTION:This suite of webinars is designed to help parents/carers and grandparents to manage family dilemmas triggered by bone marrow conditions include PNH. \nContent will cover a variety of areas from finding the right words to talk with your child about their diagnosis\, to looking after your own emotional wellbeing\,…and much much more! \n\n‘How do I talk to my child about their diagnosis?’ – 30th January\, 2025 at 12:00pm\, sign up here\n‘How do I manage times of change in my child’s life’ – 27th February\, 2025 at 12:00pm\, sign up here\n‘What about the rest of my family? How do I support them?’ – 17th March\, 2025 at 12:00pm\, sign up here \n‘How do I keep emotionally healthy? – 28th April 2025 at 12:00pm – sign up here\n‘How to use books and other resources to build family resilience’ – 29th May\, 2025 at 12:00pm – sign up here\n\nSign up to the whole series\, or just the ones which speak to you
URL:https://pnhuk.org/event/parent-and-carer-webinars/
LOCATION:Herts\, SG8 6DF
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2024/12/PNH22.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250123T180000
DTEND;TZID=Europe/London:20250123T190000
DTSTAMP:20260728T212544
CREATED:20241129T144357Z
LAST-MODIFIED:20241204T103933Z
UID:8034-1737655200-1737658800@pnhuk.org
SUMMARY:Benefits Webinar - 23 January 2025 - 6pm to 7pm
DESCRIPTION:Brought to you as part of the Better Together Alliance Project (of which PNH Support is a member)\, this webinar is designed to help you to deal with the financial burden of living with a rare condition.\nBenefits Advisor\, Robert Mandlestam will deliver this webinar to bring you information about the benefits you may be entitled to if you have or support someone with a rare condition\, and advice about how to apply for them.\nThis webinar will help if you are feeling overwhelmed with the benefit system and need help to navigate it\, or if you are just unsure about where to start.\nThis webinar will include information about the following:\n\nUniversal Credit\nPersonal Independence Payment\nCarers Allowance\nEmployment and Support Allowance\nLocal support (council tax help and local hardship schemes)\n\n\nRegister here
URL:https://pnhuk.org/event/benefits-webinar/
LOCATION:Herts\, SG8 6DF
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2024/11/video-conference-5964262_1280.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250120T120000
DTEND;TZID=Europe/London:20250120T133000
DTSTAMP:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
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:20260728T212544
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/
LOCATION:Herts\, SG8 6DF
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2024/05/Managing-Stress-PNH.png
END:VEVENT
END:VCALENDAR