BEGIN:VCALENDAR
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PRODID:-//VHL Alliance - ECPv6.13.2.1//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:VHL Alliance
X-ORIGINAL-URL:https://vhl.org
X-WR-CALDESC:Events for VHL Alliance
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X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20260308T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20261101T060000
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TZID:America/Los_Angeles
BEGIN:DAYLIGHT
TZOFFSETFROM:-0800
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DTSTART:20260308T100000
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TZOFFSETFROM:-0700
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DTSTART:20261101T090000
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260302T200000
DTEND;TZID=America/New_York:20260302T210000
DTSTAMP:20260405T194701
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:20260405T194701
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:20260405T194701
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:20260405T194701
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:20260405T194701
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:20260405T194701
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:20260405T194701
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:20260513T193000
DTEND;TZID=America/New_York:20260513T203000
DTSTAMP:20260405T194701
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:20260405T194701
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:20260405T194701
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:20260405T194701
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:20260405T194701
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
END:VCALENDAR