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X-WR-CALNAME:VHL Alliance
X-ORIGINAL-URL:https://vhl.org
X-WR-CALDESC:Events for VHL Alliance
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BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20260308T070000
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TZNAME:EST
DTSTART:20261101T060000
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260413T180000
DTEND;TZID=America/New_York:20260413T190000
DTSTAMP:20260405T163845
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:20260405T163845
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:20260405T163845
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:20260405T163845
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:20260405T163845
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:20260405T163845
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:20260405T163845
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
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