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TZID:America/New_York
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251201T200000
DTEND;TZID=America/New_York:20251201T210000
DTSTAMP:20260430T133925
CREATED:20250725T134227Z
LAST-MODIFIED:20250725T134227Z
UID:10000123-1764619200-1764622800@vhl.org
SUMMARY:December 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 the (very complicated) healthcare system – Demystifying the healthcare landscape \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/december-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/07/dec-1-2025-navigating-the-complicated-healthcare-system-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251206T080000
DTEND;TZID=America/New_York:20251206T140000
DTSTAMP:20260430T133925
CREATED:20251020T144931Z
LAST-MODIFIED:20251022T164920Z
UID:10000127-1765008000-1765029600@vhl.org
SUMMARY:VHL Connect: Atlanta
DESCRIPTION:When: December 6\, 2025 | 8:30 AM – 2:00 PM ET \nWhere: Hilton Millennium Center\, Atlanta\n2301 Sullivan Rd\, College Park\, GA 30337 \nCost: $10 (includes lunch) \n  \nJoin the VHL Alliance in Atlanta for VHL Connect\, an in-person event designed to bring together people living with VHL\, their families\, and leading experts in the field. \n  \nManaging VHL can be complex – but you don’t have to do it alone. This event offers the chance to hear directly from clinicians and researchers who specialize in VHL care\, learn from others who are living with the condition\, and connect with the community that understands your journey. \n  \nHosted in partnership with the Georgia Cancer Center at Augusta University\, a VHL Alliance Clinical Care Center\, the day will include educational sessions\, open Q&A discussions\, and opportunities to share experiences in a supportive setting. Lunch and refreshments are included. \n  \nWhat to expect: \n\nUpdates and insights from VHL experts\nConversations with patients and caregivers\nGuidance on managing the emotional and practical sides of VHL\nTime to connect with others in the community over lunch\n\n  \nWhether you’re newly diagnosed or have been managing VHL for years\, VHL Connect: Atlanta is a chance to learn\, ask questions\, and connect with our community. \n  \nSpace is limited. Register today to join us for this day of connection and learning: https://vhl.app.neoncrm.com/np/clients/vhl/eventRegistration.jsp?event=81& \n  \n  \nThis event is brought to you with support from:  \n  \n \n 
URL:https://vhl.org/vhla-event/vhl-connect-atlanta/
LOCATION:Hilton Millennium Center\, 2301 Sullivan Rd\, College Park\, GA\, 30337\, United States
CATEGORIES:In Person Event
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/10/vhl-connect-atlanta.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251210T193000
DTEND;TZID=America/New_York:20251210T203000
DTSTAMP:20260430T133925
CREATED:20250725T133019Z
LAST-MODIFIED:20250725T133019Z
UID:10000117-1765395000-1765398600@vhl.org
SUMMARY:December 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 \nFriendships \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/december-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/dec-10-2025-friendships-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260105T200000
DTEND;TZID=America/New_York:20260105T210000
DTSTAMP:20260430T133925
CREATED:20250725T134435Z
LAST-MODIFIED:20250725T134435Z
UID:10000125-1767643200-1767646800@vhl.org
SUMMARY:January 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:\nLiving fully with VHL – celebrating small wins\, changing directions\, adapting goals \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/jan-patient-caregiver-call-2026/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/07/jan-5th-2025-living-fully-with-VHL-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260114T193000
DTEND;TZID=America/New_York:20260114T203000
DTSTAMP:20260430T133925
CREATED:20250725T133227Z
LAST-MODIFIED:20250725T133244Z
UID:10000118-1768419000-1768422600@vhl.org
SUMMARY:January 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 \nBucket lists\, goals\, achievements\, accomplishments\, 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. 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/january-low-no-vision-call-2026/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/07/jan-14th-2025-bucket-lists-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260202T200000
DTEND;TZID=America/New_York:20260202T210000
DTSTAMP:20260430T133925
CREATED:20260108T162529Z
LAST-MODIFIED:20260108T162529Z
UID:10000128-1770062400-1770066000@vhl.org
SUMMARY:February 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:\nCoping with Uncertainty and the Future\nFocusing on managing the unpredictability of VHL\, planning for medical and life uncertainties\, and strategies to stay grounded while facing long-term challenges. \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/feb-2-patient-caregiver-call/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2026/01/Feb-2-2026-Coping-with-uncertainty-and-the-future.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260211T193000
DTEND;TZID=America/New_York:20260211T203000
DTSTAMP:20260430T133925
CREATED:20260113T151810Z
LAST-MODIFIED:20260113T151810Z
UID:10000134-1770838200-1770841800@vhl.org
SUMMARY:Feb 11th 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 \nWhat blindness or VHL related items would it be critical for you to pack in a hospital or emergency go bag? \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/feb-11-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/Feb-11-2026-go-bag-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260302T200000
DTEND;TZID=America/New_York:20260302T210000
DTSTAMP:20260430T133925
CREATED:20260108T162704Z
LAST-MODIFIED:20260108T162704Z
UID:10000129-1772481600-1772485200@vhl.org
SUMMARY:March 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:\nPain Management and Symptom Support\nPractical tools for coping with physical symptoms\, fatigue\, or pain\, and ways you and your caregivers can support day-to-day comfort and quality of life. \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/march-2nd-patient-caregiver-call/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2026/01/March-2nd-2026-Pain-Management-Symptom-Supprt.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260311T193000
DTEND;TZID=America/New_York:20260311T203000
DTSTAMP:20260430T133925
CREATED:20260113T151857Z
LAST-MODIFIED:20260113T151857Z
UID:10000135-1773257400-1773261000@vhl.org
SUMMARY:March 11th 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 \nHousehold management: How do you do Home upkeep and maintenance? If you do it yourself\, how? If you use outside resources\, what are they\, and how did you find them? For example\, some of the chores might be small repairs\, shoveling snow\, yard maintenance\, 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/mar-11th-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/march-11th-household-management-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20260321T090000
DTEND;TZID=America/Los_Angeles:20260321T120000
DTSTAMP:20260430T133925
CREATED:20260126T170233Z
LAST-MODIFIED:20260303T193637Z
UID:10000140-1774083600-1774094400@vhl.org
SUMMARY:VHL Connect | Seattle
DESCRIPTION:  \nJoin us for VHL Connect: Seattle on March 21st\, 2026! \n  \nDate: March 21st\, 2026 \nCost: $10 \nLocation: 255 South King Street\, 18th floor\, Seattle\, WA\, 98104. We will be in Slalom Hawk Tower on the 18th floor\, which is where the reception area is located. Note that there is a hotel connected to the building which can make locating the office part of the building a little confusing. The elevator bank for the offices is in the middle of the building lobby\, across from the waterfall sculpture. \nSchedule: 9:00 AM – Noon PST. \n  \nJoin us for a day of presentations on current VHL Research and treatment options\, along with the opportunity to meet with leading VHL Clinicians. Registration will open at 8:30 am! Lunch is included! \n  \nClick here to register now: https://vhl.app.neoncrm.com/np/clients/vhl/event.jsp?event=86& \n 
URL:https://vhl.org/vhla-event/vhl-connect-seattle/
CATEGORIES:In Person Event
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2026/01/Family-Weekend-2025-Promo-University-of-Michigan-7.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260406T200000
DTEND;TZID=America/New_York:20260406T210000
DTSTAMP:20260430T133925
CREATED:20260108T162806Z
LAST-MODIFIED:20260108T162806Z
UID:10000130-1775505600-1775509200@vhl.org
SUMMARY:April 6th 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:\nBuilding Sustainable Routines\nTips and strategies for structuring routines that conserve energy\, reduce stress\, and making room for meaningful activities without overexertion. \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/april-6-patient-caregiver-call-2/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2026/01/April-6-2026-Building-Sustainable-Routines.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260408T193000
DTEND;TZID=America/New_York:20260408T203000
DTSTAMP:20260430T133925
CREATED:20260113T152012Z
LAST-MODIFIED:20260113T152012Z
UID:10000136-1775676600-1775680200@vhl.org
SUMMARY:April 8th 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 \nHow do you strike the balance between asking for what you need and proving that you are capable? \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/april-8th-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/april-8th-asking-for-what-you-need-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260413T180000
DTEND;TZID=America/New_York:20260413T190000
DTSTAMP:20260430T133925
CREATED:20260401T145021Z
LAST-MODIFIED:20260401T155429Z
UID:10000141-1776103200-1776106800@vhl.org
SUMMARY:Avances en la enfermedad de VHL y la investigación del cáncer renal: De la biología a nuevas terapias
DESCRIPTION:  \nÚnase a la Alianza VHL para un seminario web informativo y atractivo el 13 de abril a las 6:00 p.m. (ET)\, presentado por el reconocido investigador y médico James Brugarolas\, M.D.\, Ph.D. \n  \nEn esta sesión\, el Dr. Brugarolas compartirá los últimos avances en la investigación de la enfermedad de Von Hippel-Lindau (VHL)\, incluyendo nuevas perspectivas sobre la biología del cáncer renal\, el papel de la vía HIF y las terapias emergentes que están dando forma al futuro del tratamiento. Este seminario está diseñado para pacientes\, familias\, cuidadores y cualquier persona interesada en comprender mejor la ciencia detrás de VHL y cómo los descubrimientos actuales pueden traducirse en mejores resultados para los pacientes. \n  \nHabrá tiempo para preguntas y respuestas en vivo\, brindando a los asistentes la oportunidad de interactuar directamente con Dr. Brugarolas. \n  \nNo pierda esta oportunidad de aprender de un líder en el campo y mantenerse al día con los avances más recientes en la investigación de VHL. \n  \nRegístrese aquí: https://us02web.zoom.us/meeting/register/9MXtreSwSt2BrjOvAAvzNA \n  \n__________________________ \n  \nAdvances in VHL Disease and Kidney Cancer Research: From Biology to New Therapies \n  \nJoin the VHL Alliance for an engaging and informative webinar on April 13 at 6:00 PM ET\, presented by renowned physician-scientist James Brugarolas\, M.D.\, Ph.D. \n  \nIn this session\, Dr. Brugarolas will share the latest advances in Von Hippel-Lindau (VHL) disease research\, including new insights into kidney cancer biology\, the role of the HIF pathway\, and emerging therapies that are shaping the future of treatment. This webinar is designed for patients\, families\, caregivers\, and anyone interested in better understanding the science behind VHL and how current discoveries are translating into improved patient outcomes. Please note that this webinar will be conducted in Spanish\, but Zoom can provide live subtitles in English to attendees.  \n  \nThere will be time for a live Q&A\, giving attendees the opportunity to engage directly with Dr. Brugarolas. \n  \nDon’t miss this opportunity to learn from a leader in the field and stay up to date on the latest in VHL research. \n  \nRegister here: https://us02web.zoom.us/meeting/register/9MXtreSwSt2BrjOvAAvzNA \n  \nThis webinar is brought to you with support from: 
URL:https://vhl.org/vhla-event/avances-en-la-enfermedad-de-vhl-y-la-investigacion-del-cancer-renal-de-la-biologia-a-nuevas-terapias/
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.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260504T200000
DTEND;TZID=America/New_York:20260504T210000
DTSTAMP:20260430T133925
CREATED:20260108T162928Z
LAST-MODIFIED:20260108T162928Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260506T180000
DTEND;TZID=America/New_York:20260506T190000
DTSTAMP:20260430T133925
CREATED:20260424T140303Z
LAST-MODIFIED:20260424T140510Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260513T193000
DTEND;TZID=America/New_York:20260513T203000
DTSTAMP:20260430T133925
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260601T200000
DTEND;TZID=America/New_York:20260601T210000
DTSTAMP:20260430T133925
CREATED:20260108T163035Z
LAST-MODIFIED:20260108T163035Z
UID:10000132-1780344000-1780347600@vhl.org
SUMMARY:June 1st 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:\nCommunication and Advocacy in Healthcare Settings\nDeepening skills in communicating effectively with doctors\, navigating appointments\, and making shared decisions\, especially for patients and caregivers working as a team. \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/june-1-patient-caregiver-call/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2026/01/June-1-2026-Communication-Advocacy-in-Healthcare-Settings.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260610T193000
DTEND;TZID=America/New_York:20260610T203000
DTSTAMP:20260430T133925
CREATED:20260113T152145Z
LAST-MODIFIED:20260113T152426Z
UID:10000138-1781119800-1781123400@vhl.org
SUMMARY:June 10th 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 \nIs it important for the broader VHL community to understand the needs\, differences\, and similarities of low and no vision VHL patience? If so\, how might we go about sharing our own stories and struggles with them? \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/june-10-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/june-10th-needs-of-low-vis-community-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260706T200000
DTEND;TZID=America/New_York:20260706T210000
DTSTAMP:20260430T133925
CREATED:20260108T163201Z
LAST-MODIFIED:20260108T163201Z
UID:10000133-1783368000-1783371600@vhl.org
SUMMARY:July 6th 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:\nFinancial and Practical Planning\nAddressing work\, insurance\, medical bills\, disability resources\, and other practical challenges. \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/july-6-patient-caregiver-call/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2026/01/July-6-2026-Financial-Practical-Planning.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260708T193000
DTEND;TZID=America/New_York:20260708T203000
DTSTAMP:20260430T133925
CREATED:20260113T152523Z
LAST-MODIFIED:20260113T152523Z
UID:10000139-1783539000-1783542600@vhl.org
SUMMARY:July 8th 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 \nWhat mental health practices have you found both successful and accessible? What practices do you wish were accessible but aren’t? \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/july-8th-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/july-8th-mental-health-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260807T170000
DTEND;TZID=America/New_York:20260809T143000
DTSTAMP:20260430T133925
CREATED:20260428T145054Z
LAST-MODIFIED:20260428T194603Z
UID:10000144-1786122000-1786285800@vhl.org
SUMMARY:Family Weekend 2026
DESCRIPTION:The VHL Alliance invites you to join us for our annual Family Weekend\, a unique opportunity to connect with the VHL community\, hear from leading experts\, and share experiences with others impacted by von Hippel-Lindau (VHL) disease. \n \n \nWhen: August 7-9\, 2026 \n \n \nWhere: Kimpton Everly Hotel1800 Argyle Ave\, Los Angeles\, California 90028 United States \nClick here to secure a discounted room at the Everly Hotel. \n \n \nRegistration Link: Click here to secure your spot today! \n \n \nWhat to Expect: \n\nEducational Sessions: Learn the latest in VHL research\, treatments\, and patient care from top medical professionals.\nCommunity Building: Meet and bond with families\, patients\, caregivers\, and supporters of the VHL community.\nInteractive Workshops: Participate in hands-on activities and discussions tailored to help navigate the challenges of living with VHL.\nKid-Friendly Activities: Fun\, supervised programs for children\, making this event enjoyable for all ages.\nA dedicated Young Adult track for VHLers between the ages of 21 and 35\n\n \nWho Should Attend: \n\nIndividuals and families living with VHL\nMedical professionals and researchers\nCaregivers\, advocates\, and supporters\n\n \nWhether this is your first Family Weekend or you join us every year\, Family Weekend always promises to inspire\, inform\, and connect. Come be part of a supportive community that understands the unique challenges of living with VHL. \n \nTravel scholarships are available for this event\, too. Be sure to mark your scholarship interest on the registration form and our team will be in touch! \n \n \nEarly bird tickets are available for only $25 if you register before June 1st\, 2026! \n*Please note that every attendee must register for a ticket to secure their spot* \n					\n									Register Now!
URL:https://vhl.org/vhla-event/family-weekend-2026/
LOCATION:Kimpton Everly Hotel\, 1800 Argyle Ave\, Los Angeles\, 90028\, United States
CATEGORIES:In Person Event
ATTACH;FMTTYPE=image/png:https://vhl.org/wp-content/uploads/2026/04/fam-weekend-promo.png
ORGANIZER;CN="VHL Alliance":MAILTO:info@vhl.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261106
DTEND;VALUE=DATE:20261109
DTSTAMP:20260430T133925
CREATED:20260423T125305Z
LAST-MODIFIED:20260423T130204Z
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:https://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:https://vhl.org/wp-content/uploads/2026/04/iStock-801296936-copy.jpg
END:VEVENT
END:VCALENDAR