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X-WR-CALDESC:Events for PNH Support
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260314T103000
DTEND;TZID=Europe/London:20260314T120000
DTSTAMP:20260728T202229
CREATED:20250516T080814Z
LAST-MODIFIED:20250829T150808Z
UID:8333-1773484200-1773489600@pnhuk.org
SUMMARY:MEETING: East Anglia Group Patient and Family Face-to-Face Meeting
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. \n\n\nPlease contact contact@pnhuk.org if you have any questions.
URL:https://pnhuk.org/event/east-anglia-group-patient-and-family-face-to-face-meeting-2/
LOCATION:Bury Lane Farm Shop Café\, A10 By Pass\, Melbourn\, Royston\, Herts\, SG8 6DF\, SG8 6DF\, United Kingdom
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2025/05/14th-April-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251206T123000
DTEND;TZID=Europe/London:20251206T150000
DTSTAMP:20260728T202229
CREATED:20250516T080640Z
LAST-MODIFIED:20250829T151113Z
UID:8328-1765024200-1765033200@pnhuk.org
SUMMARY:East Anglia Group Patient Christmas Lunch 
DESCRIPTION:Join PNH patients and family members for a relaxed Christmas lunch. Pre-booking required and cost to be confirmed – more details to follow. \nPlease contact contact@pnhuk.org if you have any questions in the meantime.
URL:https://pnhuk.org/event/east-anglia-group-patient-christmas-lunch/
LOCATION:The Old Bull\, 56 High Street\, Royston\, Herts.   SG8 9AW\, The Old Bull\, 56 High Street\, Royston\, Hertfordshire\, SG8 9AW\, United Kingdom
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:20250913T110000
DTEND;TZID=Europe/London:20250913T123000
DTSTAMP:20260728T202229
CREATED:20250806T141424Z
LAST-MODIFIED:20250806T141624Z
UID:8376-1757761200-1757766600@pnhuk.org
SUMMARY:MEETING - London Patient and Family Face-to-Face meeting
DESCRIPTION:This is an informal Saturday morning catch-up for all members of our PNH community. Newcomers and regulars are most welcome. The venue information can be found here.\n\nPlease email contact@pnhuk.org with any questions.
URL:https://pnhuk.org/event/meeting-london-patient-and-family-face-to-face-meeting/
LOCATION:The Atrium Café\, National Theatre\, London\, SE1 9PX
ATTACH;FMTTYPE=image/jpeg:https://pnhuk.org/wp-content/uploads/2022/04/coffee-g5c9910f10_1920.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250906T103000
DTEND;TZID=Europe/London:20250906T120000
DTSTAMP:20260728T202229
CREATED:20250516T080256Z
LAST-MODIFIED:20250829T150951Z
UID:8325-1757154600-1757160000@pnhuk.org
SUMMARY:MEETING: East Anglia Group Patient and Family Face-to-Face Meeting
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. \n\nPlease contact contact@pnhuk.org if you have any questions
URL:https://pnhuk.org/event/east-anglia-group-patient-and-family-face-to-face-meeting/
LOCATION:Bury Lane Farm Shop Café\, A10 By Pass\, Melbourn\, Royston\, Herts\, SG8 6DF\, SG8 6DF\, United Kingdom
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2025/05/18-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250814T183000
DTEND;TZID=Europe/London:20250828T200000
DTSTAMP:20260728T202229
CREATED:20250512T121906Z
LAST-MODIFIED:20250624T121908Z
UID:8321-1755196200-1756411200@pnhuk.org
SUMMARY:COURSE (short) - Managing Stress and Uncertainty with Maria Mullan
DESCRIPTION: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.  \n  \nFor more information and to join\, click here.
URL:https://pnhuk.org/event/course-short-managing-stress-and-uncertainty-with-maria-mullan-2/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2025/05/23-June-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250707T080000
DTEND;TZID=Europe/London:20250818T170000
DTSTAMP:20260728T202229
CREATED:20250407T114535Z
LAST-MODIFIED:20250624T121851Z
UID:8250-1751875200-1755536400@pnhuk.org
SUMMARY:COURSE - Moving Forward\, Living the life that matters to you
DESCRIPTION:Living the life that matters to us is key to everyone’s emotional wellbeing.\n\nBut 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.\n\nThis 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. Learn tools to help you be the person that matters to you even during challenging times.\n\nFor further information and to sign up click here
URL:https://pnhuk.org/event/course-moving-forward-living-the-life-that-matters-to-you/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2025/04/22nd-April-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250612T120000
DTEND;TZID=Europe/London:20250612T130000
DTSTAMP:20260728T202229
CREATED:20250407T110147Z
LAST-MODIFIED:20250512T120507Z
UID:8240-1749729600-1749733200@pnhuk.org
SUMMARY:What about the rest of my family – how do I support them?
DESCRIPTION:Themes in this webinar will include:\n\n\nHow do I build family resilience?\nHow do I deal with challenging behaviour in my other children? For example\, jealousy\, sleep problems\, school refusal.\nHow do I keep a family routine?\n\nFor more information and to register\, click here 
URL:https://pnhuk.org/event/what-about-the-rest-of-my-family-how-do-i-support-them/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2025/04/19th-May-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250604T080000
DTEND;TZID=Europe/London:20250723T170000
DTSTAMP:20260728T202229
CREATED:20250407T114635Z
LAST-MODIFIED:20250624T121836Z
UID:8252-1749024000-1753290000@pnhuk.org
SUMMARY:COURSE - Mindfulness for Stress
DESCRIPTION:Mindfulness 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. \nDuring this free 8-week course you will; \n\nLearn how to find the clear space in your mind to choose how you want to respond to whatever life brings \nLearn tools to help you be the person that matters to you even during challenging times\nFind ways to press the pause button in your mind and quieten the busyness of everyday life\n\n\nClick here for more details and to book.
URL:https://pnhuk.org/event/course-mindfulness-for-stress/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2025/05/14th-April-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250529T120000
DTEND;TZID=Europe/London:20250529T130000
DTSTAMP:20260728T202229
CREATED:20250407T105936Z
LAST-MODIFIED:20250509T134128Z
UID:8236-1748520000-1748523600@pnhuk.org
SUMMARY:How to use books and other resources to build family resilience
DESCRIPTION:Themes covered in this webinar will include:\n\n\nRecommendations of books and other resources (e.g. youtube clips) that help you to communicate with your children\, help them manage tricky emotions and build overall family resilience.\nHow to use books and other resources\nRecommendations of social media and websites that your child and teen can access safely.\n\n\nSign up here
URL:https://pnhuk.org/event/how-to-use-books-and-other-resources-to-build-family-resilience/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2025/04/29th-April-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250517T103000
DTEND;TZID=Europe/London:20250517T120000
DTSTAMP:20260728T202229
CREATED:20240629T150541Z
LAST-MODIFIED:20241204T110837Z
UID:7961-1747477800-1747483200@pnhuk.org
SUMMARY:PNH Patient/Family Online Meeting - Saturday 17 May 2025 - 10.30am to 12pm
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!\n\n\n\nDate: Saturday 17 May 2025\nTime: 10.30am to 12pm\n\n\nEmail contact@pnhuk.org for the Zoom details. If you need assistance using Zoom please also get in touch.
URL:https://pnhuk.org/event/pnh-patient-family-online-meeting-saturday-17-may-2025/
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:20250513T080000
DTEND;TZID=Europe/London:20250617T170000
DTSTAMP:20260728T202229
CREATED:20250407T110656Z
LAST-MODIFIED:20250509T134048Z
UID:8244-1747123200-1750179600@pnhuk.org
SUMMARY:COURSE Managing Stress and Living with Uncertainty with Catarina Baptista
DESCRIPTION:This 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.\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.\n\nRegister here.
URL:https://pnhuk.org/event/course-managing-stress-and-living-with-uncertainty-with-catarina-baptista/
ATTACH;FMTTYPE=image/png:https://pnhuk.org/wp-content/uploads/2025/04/6th-May-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250507T100000
DTEND;TZID=Europe/London:20250507T120000
DTSTAMP:20260728T202229
CREATED:20250407T110827Z
LAST-MODIFIED:20250407T110827Z
UID:8246-1746612000-1746619200@pnhuk.org
SUMMARY:Mindfulness for Stress Taster Session
DESCRIPTION:Not sure if a mindfulness-based approach is for you?   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.\nClick here for further details
URL:https://pnhuk.org/event/mindfulness-for-stress-taster-session-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250428T120000
DTEND;TZID=Europe/London:20250428T130000
DTSTAMP:20260728T202229
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/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250315T103000
DTEND;TZID=Europe/London:20250315T120000
DTSTAMP:20260728T202229
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/
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:20260728T202229
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/
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:20260728T202229
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/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250224T180000
DTEND;TZID=Europe/London:20250224T190000
DTSTAMP:20260728T202229
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/
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:20260728T202229
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/
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:20260728T202229
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:20260728T202229
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250212T180000
DTEND;TZID=Europe/London:20250212T193000
DTSTAMP:20260728T202229
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250208T100000
DTEND;TZID=Europe/London:20250208T113000
DTSTAMP:20260728T202229
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250130T120000
DTEND;TZID=Europe/London:20250130T130000
DTSTAMP:20260728T202229
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250123T180000
DTEND;TZID=Europe/London:20250123T190000
DTSTAMP:20260728T202229
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250120T120000
DTEND;TZID=Europe/London:20250120T133000
DTSTAMP:20260728T202229
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250116T183000
DTEND;TZID=Europe/London:20250116T203000
DTSTAMP:20260728T202229
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250116T183000
DTEND;TZID=Europe/London:20250116T203000
DTSTAMP:20260728T202229
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20241207T123000
DTEND;TZID=Europe/London:20241207T143000
DTSTAMP:20260728T202229
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20241207T110000
DTEND;TZID=Europe/London:20241207T123000
DTSTAMP:20260728T202229
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/
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20241109T103000
DTEND;TZID=Europe/London:20241109T120000
DTSTAMP:20260728T202229
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/
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