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X-WR-CALDESC:Events for VHL Alliance
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DTSTART;TZID=America/New_York:20251103T200000
DTEND;TZID=America/New_York:20251103T210000
DTSTAMP:20260405T153430
CREATED:20250725T134135Z
LAST-MODIFIED:20250725T134135Z
UID:10000122-1762200000-1762203600@vhl.org
SUMMARY:November 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:\nFamily and relationship dynamics – Navigating marriage\, parenting\, and friendships with a rare disease in the mix \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/november-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/07/nov-3rd-2025-family-and-relationship-dynamics-scaled.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251112T193000
DTEND;TZID=America/New_York:20251112T203000
DTSTAMP:20260405T153430
CREATED:20250725T132832Z
LAST-MODIFIED:20250725T132832Z
UID:10000116-1762975800-1762979400@vhl.org
SUMMARY:November Low/No Vision Call
DESCRIPTION:Second Wednesday of every month. \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 \nConfidence: when do we feel it\, and when do we feel the lack of it? \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 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. If you would like to join the call\, please fill out the form below. \n  \nIf you would like to join the call list please click here to register.
URL:https://vhl.org/vhla-event/november-low-no-vision-call-2025/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/07/nov-12-2025-confidence-scaled.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251117T160000
DTEND;TZID=America/New_York:20251117T170000
DTSTAMP:20260405T153430
CREATED:20251020T141626Z
LAST-MODIFIED:20251028T163144Z
UID:10000126-1763395200-1763398800@vhl.org
SUMMARY:Webinar Series: The Importance of Coordinated Care in Addressing VHL
DESCRIPTION:Managing Von Hippel-Lindau disease (VHL) requires more than treating individual tumors—it demands a carefully coordinated approach to care. Because VHL can affect multiple organ systems\, patients benefit most when their care is managed by a multidisciplinary team that communicates and collaborates effectively. \n  \nJoin the VHL Alliance for our upcoming webinar\, The Importance of Coordinated Care in Addressing VHL\, to explore how a team-based approach leads to better outcomes and quality of life for people living with VHL. Our expert presenters from UT Southwestern will discuss how coordinated care is implemented in clinical practice\, what patients and families can do to ensure their care team is aligned\, and how to make use of trusted resources such as the VHL Alliance Clinical Care Network and VHL Surveillance Guidelines. \n  \nThis 45-minute presentation will be followed by a 15-minute Q&A session\, giving attendees the opportunity to ask questions directly of our speakers\, and is free to attend.  \n  \nSpeakers:\nKevin Courtney\, MD\, PhD\nProfessor\, Department of Internal Medicine\, Division of Hematology/Oncology\nDirector\, Genitourinary Medical Oncology\nCo-Leader\, Genitourinary Oncology Disease-Oriented Team\nUT Southwestern Harold C. Simmons Comprehensive Cancer Center \n  \nQian (Janie) Qin\, MD\nAssistant Professor\, Eugene P. Frenkel\, M.D. Scholar in Clinical Medicine\nDepartment of Internal Medicine\, Division of Hematology/Oncology\nUT Southwestern Harold C. Simmons Comprehensive Cancer Center \n  \nRegister here: https://us02web.zoom.us/meeting/register/Hy2W3DDZR0iTF1icv1Ngyg \n  \nThis event is brought to you with support from: 
URL:https://vhl.org/vhla-event/webinar-series-the-importance-of-coordinated-care-in-addressing-vhl/
LOCATION:Zoom / Online
CATEGORIES:Workshop
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/10/VHL-101-Research-Update-with-Othon-Iliopoulos-MD-2.jpg
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