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X-WR-CALDESC:Events for PNH Support
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DTSTART;TZID=Europe/London:20250116T183000
DTEND;TZID=Europe/London:20250116T203000
DTSTAMP:20260802T055346
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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DTSTART;TZID=Europe/London:20250116T183000
DTEND;TZID=Europe/London:20250116T203000
DTSTAMP:20260802T055346
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:20250120T120000
DTEND;TZID=Europe/London:20250120T133000
DTSTAMP:20260802T055346
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:20250123T180000
DTEND;TZID=Europe/London:20250123T190000
DTSTAMP:20260802T055346
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:20250130T120000
DTEND;TZID=Europe/London:20250130T130000
DTSTAMP:20260802T055346
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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