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X-WR-CALDESC:Events for VHL Alliance
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DTSTART;TZID=America/New_York:20260504T200000
DTEND;TZID=America/New_York:20260504T210000
DTSTAMP:20260108T162928Z
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UID:10000131-1777924800-1777928400@vhl.org
SUMMARY:May 4th 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:\nSustaining Yourself While Caring for Others\nPractical strategies for managing stress\, avoiding burnout\, and keeping your own life and goals in focus. \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/may-4th-patient-caregiver-call/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2026/01/May4-2026-Sustaining-Yourself-While-Caring-For-Others.jpg
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DTSTART;TZID=America/New_York:20260506T180000
DTEND;TZID=America/New_York:20260506T190000
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CREATED:20260424T140303Z
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UID:10000143-1778090400-1778094000@vhl.org
SUMMARY:Parents of VHLers: Navigating Care\, Emotions\, and Growing Independence
DESCRIPTION:Date & Time: May 6\, 2026 at 6:00 PM ET\nLocation: Virtual (Zoom)\nRegistration link: https://us02web.zoom.us/meeting/register/8C0h7JYFRKmXUjoeB184BA#/ \n  \nParenting a child with VHL comes with unique challenges\, from balancing complex medical care to managing uncertainty and supporting your child’s emotional well-being at every stage. This webinar is designed specifically for parents and caregivers who are navigating these realities every day. \n  \nJoin us for an honest\, supportive conversation focused on practical strategies and shared experiences. Together\, we’ll explore how to manage the ongoing demands of care while also making space for your family’s life beyond VHL. \n  \nDuring this session\, we’ll touch on: \n  \nNavigating the Medical Maze: Tips for managing the constant cycle of MRIs\, screenings\, and specialist visits without becoming overwhelmed\nBattling “Scanxiety” & Burnout: Real-world strategies to cope with emotional strain\, genetic guilt\, and the anxiety surrounding scan results\nHaving the Hard Conversations: Guidance on talking with children\, teens\, and others about a VHL diagnosis in a way that informs without increasing fear\nFrom Advocacy to Independence: Supporting your child in school and healthcare settings\, and preparing for the transition to young adulthood \n  \nThis webinar will be moderated by: \n  \nKimberly Parsley is a writer\, life skills coach\, and disability advocate who became blind at age 14 due to VHL. She currently serves as an Independent Living Specialist with the Center for Accessible Living and hosts “Demand and Disrupt: a Disability Podcast.” She lives in Bowling Green\, Kentucky with her husband and two children. \n  \nMiranda Di Biase\, MS\, CGC is a pediatric genetic counselor at The Children’s Hospital at Montefiore and a new VHL Clinical Partner. She is dedicated to supporting families through diagnosis\, care planning\, and long-term management. \n  \nWhether you are newly navigating a VHL diagnosis or have been on this journey for years\, this session offers a space to learn\, connect\, and feel supported alongside others who understand. \n  \nThis event is brought to you with support from: 
URL:https://vhl.org/vhla-event/parents-of-vhlers-navigating-care-emotions-and-growing-independence/
LOCATION:Zoom / Online
CATEGORIES:Workshop
ATTACH;FMTTYPE=image/png:https://vhl.org/wp-content/uploads/2026/04/VHL-101-Research-Update-with-Othon-Iliopoulos-MD-4.png
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DTSTART;TZID=America/New_York:20260513T193000
DTEND;TZID=America/New_York:20260513T203000
DTSTAMP:20260113T152051Z
CREATED:20260113T152051Z
LAST-MODIFIED:20260113T152051Z
UID:10000137-1778700600-1778704200@vhl.org
SUMMARY:May 13th 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 \nWho were the most supportive people when you were losing your sight or going through other traumatic things with VHL? What did they do or not do that gave you strength\, confidence\, self worth\, etc? \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. \n  \nIf you would like to join the call list please click here to register.
URL:https://vhl.org/vhla-event/may-13-low-no-vision-call/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2026/01/may-13th-who-were-the-most-supportive-people-scaled.jpg
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