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X-WR-CALDESC:Events for VHL Alliance
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DTSTART;TZID=America/New_York:20261102T200000
DTEND;TZID=America/New_York:20261102T210000
DTSTAMP:20260914T211021Z
CREATED:20260617T152626Z
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UID:10000148-1793649600-1793653200@vhl.org
SUMMARY:November 2nd Patient/Caregiver Call
DESCRIPTION:First Monday of every month. \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the first Monday of every month at 8 PM ET. \n  \nCall topic:\nNavigating Independence and Asking for Help\nDiscussing the balance between self-sufficiency and accepting support\, including how patients and caregivers can communicate needs effectively. \n  \nIf you would like to join the call list please click here to register. \n  \nThis event is brought to you with support from:
URL:http://vhl.org/vhla-event/nov-2-patient-caregiver-call/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/png:http://vhl.org/wp-content/uploads/2026/06/November-2-2026-Navigating-Independence-and-Asking-for-Help.png
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20261106
DTEND;VALUE=DATE:20261109
DTSTAMP:20260423T130204Z
CREATED:20260423T125305Z
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UID:10000142-1793923200-1794182399@vhl.org
SUMMARY:VHL Alliance Medical Symposium
DESCRIPTION:Advancing Research\, Treatment\, and Care for Von Hippel-Lindau Disease\nJoin leading researchers\, clinicians\, and advocates for groundbreaking discussions on VHL disease management and innovation. \n  \nThe 17th International VHL Medical Symposium\, hosted by the VHL Alliance and Mass General Brigham\, will bring scientists\, clinicians\, and advocates together for two days of collaboration\, idea exchange\, and thought leadership. \n  \nThis premier event features cutting-edge presentations\, collaborative workshops\, and networking opportunities designed to accelerate progress in understanding and treating VHL disease. \n  \nWhere: Boston\, MA \nWhen: Nov 6-8\, 2026 \n  \nThis biennial event\, hosted by the VHL Alliance\, is one of the most important gatherings in our field. It’s where researchers\, clinicians\, and advocates come together to share the latest discoveries\, explore emerging treatments\, and collaborate on what’s next for VHL care. \nWhether you’re a healthcare professional\, researcher\, or advocate\, this is your opportunity to be part of the conversations shaping the future of VHL. \n  \nWhat to expect: \n\nThe latest breakthroughs in VHL research and treatment\nInsights from leading global experts\nCollaborative discussions across disciplines\nOpportunities to connect with peers advancing VHL care\n\n\nAt the most recent symposium\, more than 200 experts gathered to exchange ideas and advance progress toward better outcomes for people living with VHL. \nThis year’s event builds on that momentum\, creating space for innovation\, collaboration\, and meaningful progress. Secure your spot today by clicking the button below! \n					\n									Register Now\n					\n					\n									Submit An Abstract\n					\n					\n									Visit the Symposium Website\n					\n																														 \n  \nExperience three days of comprehensive programming designed to advance VHL research\, improve patient outcomes\, and strengthen our global community. \n  \nVisit the Symposium Website by clicking here to learn more about the host committee\, hotel details for the event\, keynote speakers\, and more.  \n  \nRegistration is open now! \n  \nPatient Advocates & Students: $25 \nPostdocs & Residents: $50 \nScientists & Clinicians: $100 \nCorporate & Industry Rate: $1\,000
URL:http://vhl.org/vhla-event/vhl-alliance-medical-symposium/
LOCATION:Hyatt Regency Boston/Cambridge\, 575 Memorial Drive\, Cambridge\, MA\, 02139\, United States
CATEGORIES:In Person Event
ATTACH;FMTTYPE=image/jpeg:http://vhl.org/wp-content/uploads/2026/04/iStock-801296936-copy.jpg
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DTSTART;TZID=America/New_York:20261110T190000
DTEND;TZID=America/New_York:20261110T200000
DTSTAMP:20261007T150450Z
CREATED:20261007T145413Z
LAST-MODIFIED:20261007T150450Z
UID:10000159-1794337200-1794340800@vhl.org
SUMMARY:Webinar Series: What About What I Need?
DESCRIPTION:  \nWhat About What I Need? An honest conversation about getting clear on what you need\, asking for what you want\, handling loneliness\, and navigating the holidays with VHL. \n  \nJoin us for our community webinar series on November 10th at 7 pm EST. This webinar will be hosted by Leona deVinne. \n  \nSo often\, living with VHL means thinking about how our health affects the people around us. We may set aside our own needs because we don’t want to feel like a burden. What if we didn’t have to? \n  \nThe holidays can bring these feelings into sharper focus. Plans\, family expectations and changing energy levels can make it difficult to say what we want. Even when we’re surrounded by people\, we may feel lonely or misunderstood. \n  \nIn this interactive workshop\, we’ll make room for a question that can get lost in the day-to-day realities of VHL: What do I need and want? Through reflection\, journalling and conversation\, we’ll explore how guilt and the fear of being a burden shape our choices\, how to ask for what matters to us\, and how to care for others without setting ourselves aside. \n  \nParticipants will leave with greater clarity about their needs\, language to help them ask for what they want\, and simple ways to meet themselves with compassion through the holidays. \n  \nSecure your spot here: https://us02web.zoom.us/meeting/register/mk402LzUQ8KSErhicQfrig#/registration \n  \nThis webinar is brought to you with support from:  \n  \n \n 
URL:http://vhl.org/vhla-event/webinar-series-what-about-what-i-need/
LOCATION:TX
CATEGORIES:Workshop
ATTACH;FMTTYPE=image/png:http://vhl.org/wp-content/uploads/2026/10/Copy-of-Copy-of-Research-Grants-Promo-5.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261118T193000
DTEND;TZID=America/New_York:20261118T203000
DTSTAMP:20260914T211015Z
CREATED:20260617T154125Z
LAST-MODIFIED:20260914T211015Z
UID:10000154-1795030200-1795033800@vhl.org
SUMMARY:November 18th Low/No Vision Call
DESCRIPTION:Second Wednesday of every month. *Please note that this call has been delayed one week due to Veterans Day! \n  \nLiving with low or no vision creates unique challenges for VHL patients. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. \n  \nOur call topic:\n \nWe will be discussing basic blindness skills. \n  \nIf you are blind or visually impaired as a result of VHL\, we welcome you to participate on the low and no vision call. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET. \n  \nIf you would like to join the call list please click here to register. \n  \nThis event is brought to you with support from:
URL:http://vhl.org/vhla-event/nov-18-low-no-vision-call/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/png:http://vhl.org/wp-content/uploads/2026/06/November-18-2026-moved-from-Nov-11-—-Veterans-Day-blindness-skills.png
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