BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Beacon for rare diseases - ECPv6.17.0//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:Beacon for rare diseases X-ORIGINAL-URL:https://www.rarebeacon.org X-WR-CALDESC:Events for Beacon for rare diseases REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:Europe/Paris BEGIN:DAYLIGHT TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST DTSTART:20230326T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20231029T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST DTSTART:20240331T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20241027T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST DTSTART:20250330T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20251026T010000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20240312T110000 DTEND;TZID=Europe/Paris:20240326T130000 DTSTAMP:20251204T161752Z CREATED:20240118T114124Z LAST-MODIFIED:20251204T161752Z UID:55257-1710241200-1711458000@www.rarebeacon.org SUMMARY:Building rare resilience DESCRIPTION:We are delighted to be re-running our 2022 workshop on Building Rare Resilience\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Leading a rare disease community is unique in its demands and can be both rewarding and challenging. Rare leaders\, who often work alone\, assume multifaceted roles within their communities. \nThey serve as experts in their respective conditions\, act as catalysts for research initiatives\, and frequently serve as a crucial support system for patients and families navigating the complexities of understanding and accepting their diagnoses. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Being a rare leader demands a significant investment of personal time and energy\, and leaders’ mental health can often take a back seat to the needs of their community. \nThis three-part workshop aims to give patient group leaders the space to focus on their own mental health\, after all\, you can’t pour from an empty cup. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n The workshop will be led by mental health experts Rareminds and will look at:\n\nboundary setting\nmanaging expectations\ndealing with burnout\n\nThrough activities and discussion\, you will learn practical tools and strategies to look after your own well-being as a rare leader. \n \n \n \n \n \n This workshop is a repeat\, spaces are limited and priority will be given to individuals taking part for the first time. While attending all three sessions is recommended for the optimal experience\, each session is designed to stand alone\, allowing you to select the ones most relevant to you. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Session one: How did I get into this? Being a community leader and having a life\nTuesday 12th March\, 11:00 – 13:00\nIn this series of workshops\, we move the focus away from the needs of your community to your own well-being needs as a Patient Leader. \n \n \n \n \n \n The workshop will explore:\n \nHow ‘lived experience’ can be a great asset to your role\, but can also bring challenges\nThe common challenges and pressures of running a small rare disease patient organisation\nHow to find\, or keep\, boundaries between your work as a patient leader (paid or unpaid) and your personal life\nWays to maintain ‘work-life’ balance\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Session two: Stuck in the middle – managing expectations and competing demands\nTuesday 19th March\, 11:00 – 13:00\nWhen running a patient community\, it can sometimes feel like it becomes all about what you ‘aren’t doing’ rather than celebrating and recognising your achievements as a Leader. \n \n \n \n \n \n The workshop will explore:\n \nThe common characteristics and experiences of Rare Leaders\nManaging the expectations and demands of stakeholders – whether it’s your trustees\, your community\, industry/healthcare professionals\, or your own!\nStrategies for keeping your own emotional well-being ‘in the picture’\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Session three: Avoiding burnout\nTuesday 26th March\, 11:00 – 13:00\nThose living with rare conditions often experience a lot of unmet needs and correspondingly high emotional distress. Rare Leaders are often highly motivated to not disappoint the communities they serve\, but can then run the risk of ‘burning out’ as a result. \n \n \n \n \n \n The workshop will explore:\n \nWhat is burnout?\nThe importance of ‘pacing’ (personally and organisationally)\nExplore ways to prevent\, or recover from\, burnout\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the trainer\n \n \n \n \n \n All workshops are facilitated by Kym Winter\, CEO and Clinical Director\, Rareminds CIO\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Kym is the Clinical Director and Founder of Rareminds\, a UK based charity providing specialist psychotherapy\, counselling and emotional well-being resources to rare disease communities. \nA psychotherapist for nearly 30 years across the NHS\, higher education and UK third sector\, she has worked with individuals\, couples\, leaders and healthcare professionals impacted by rare diseases since 2013. \nShe also has lived experience of a rare genetic condition in her immediate family. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n  \nOur new deposit scheme\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Registering for this workshop will require paying a refundable deposit of £5 per session upon registration. This deposit will be kept safe in Eventbrite until after the training has been completed. \nFollowing the event\, if you have attended and signed in\, you will get your full deposit back. \nWe understand that circumstances can change\, especially in the rare disease community. Should you register for the event and realise you can no longer able to attend please let us know as soon as possible. \nWe will endeavour to refund your deposit in full provided reasonable notice is given. Reasonable notice for this event is no later than 3 working days before. \nFind out more about our deposit scheme here. If you have any questions\, please contact projects@rarebeacon.org. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Spaces are limited so claim yours now to avoid missing out!\n \n Register here\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n\n\n\n\n \n \n \n \n \n Please note: the ticket window may take a few seconds to load.  URL:https://www.rarebeacon.org/event/building-rare-resilience/ LOCATION:Online via Zoom CATEGORIES:Online,Workshop ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/01/BRR24-facebook.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT END:VCALENDAR