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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260506T180000
DTEND;TZID=America/New_York:20260506T190000
DTSTAMP:20260508T103225
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:20260504T200000
DTEND;TZID=America/New_York:20260504T210000
DTSTAMP:20260508T103225
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:20260413T180000
DTEND;TZID=America/New_York:20260413T190000
DTSTAMP:20260508T103225
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:20260408T193000
DTEND;TZID=America/New_York:20260408T203000
DTSTAMP:20260508T103225
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:20260406T200000
DTEND;TZID=America/New_York:20260406T210000
DTSTAMP:20260508T103225
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:20260311T193000
DTEND;TZID=America/New_York:20260311T203000
DTSTAMP:20260508T103225
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/New_York:20260302T200000
DTEND;TZID=America/New_York:20260302T210000
DTSTAMP:20260508T103225
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:20260211T193000
DTEND;TZID=America/New_York:20260211T203000
DTSTAMP:20260508T103225
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:20260202T200000
DTEND;TZID=America/New_York:20260202T210000
DTSTAMP:20260508T103225
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:20260114T193000
DTEND;TZID=America/New_York:20260114T203000
DTSTAMP:20260508T103225
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:20260105T200000
DTEND;TZID=America/New_York:20260105T210000
DTSTAMP:20260508T103225
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:20251210T193000
DTEND;TZID=America/New_York:20251210T203000
DTSTAMP:20260508T103225
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:20251201T200000
DTEND;TZID=America/New_York:20251201T210000
DTSTAMP:20260508T103225
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:20251117T160000
DTEND;TZID=America/New_York:20251117T170000
DTSTAMP:20260508T103225
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251112T193000
DTEND;TZID=America/New_York:20251112T203000
DTSTAMP:20260508T103225
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251103T200000
DTEND;TZID=America/New_York:20251103T210000
DTSTAMP:20260508T103225
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251008T193000
DTEND;TZID=America/New_York:20251008T203000
DTSTAMP:20260508T103225
CREATED:20250725T132635Z
LAST-MODIFIED:20250725T132635Z
UID:10000115-1759951800-1759955400@vhl.org
SUMMARY:October 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 is support and who are our supporters? \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/october-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/oct-8-2025-what-is-support-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251006T200000
DTEND;TZID=America/New_York:20251006T210000
DTSTAMP:20260508T103225
CREATED:20250725T134023Z
LAST-MODIFIED:20250725T134023Z
UID:10000121-1759780800-1759784400@vhl.org
SUMMARY:October 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:\nSelf-advocacy and resilience – Becoming a powerful advocate for you and your loved ones through empowerment and emotional resilience \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/october-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/07/october-6th-2025-self-advocacy-and-resilience-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250910T193000
DTEND;TZID=America/New_York:20250910T203000
DTSTAMP:20260508T103225
CREATED:20250725T132410Z
LAST-MODIFIED:20250725T132425Z
UID:10000114-1757532600-1757536200@vhl.org
SUMMARY:September 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 express your feelings? \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/sept-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/sept-10-2025-expressing-your-feelings-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250908T200000
DTEND;TZID=America/New_York:20250908T210000
DTSTAMP:20260508T103225
CREATED:20250725T133911Z
LAST-MODIFIED:20250725T133911Z
UID:10000120-1757361600-1757365200@vhl.org
SUMMARY:September 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:\nEmotional well-being – Dealing with stress\, anxiety and uncertainty \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/september-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/07/sept-8th-2025-emotional-well-being-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250813T193000
DTEND;TZID=America/New_York:20250813T203000
DTSTAMP:20260508T103225
CREATED:20250725T132152Z
LAST-MODIFIED:20250725T132152Z
UID:10000113-1755113400-1755117000@vhl.org
SUMMARY:August 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 \nTechniques\, hacks\, and shortcuts we’ve come up with to make every day tasks easier. \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/aug-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/aug-13-2025-hacks-for-making-life-easier-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250804T200000
DTEND;TZID=America/New_York:20250804T210000
DTSTAMP:20260508T103225
CREATED:20250725T133633Z
LAST-MODIFIED:20250725T133633Z
UID:10000119-1754337600-1754341200@vhl.org
SUMMARY:August 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 a healthy support network – Managing isolation and building connections \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/august-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/07/aug-4-2025-building-a-healthy-support-network-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250709T193000
DTEND;TZID=America/New_York:20250709T203000
DTSTAMP:20260508T103225
CREATED:20250701T192832Z
LAST-MODIFIED:20250701T192832Z
UID:10000112-1752089400-1752093000@vhl.org
SUMMARY:July 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 \n“Feelings of inclusion. Are there things that you do to make sure that you feel included? In what situations do you feel that you aren’t being included? We will also talk about tips\, tricks\, and products that make our lives easier\, particularly in regard to cooking and food preparation.” \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/july-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/Decision-Fatigue-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250707T200000
DTEND;TZID=America/New_York:20250707T210000
DTSTAMP:20260508T103225
CREATED:20250630T191620Z
LAST-MODIFIED:20250630T191640Z
UID:10000111-1751918400-1751922000@vhl.org
SUMMARY:July 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:\nIntroducing our new call moderator\, Devon Ciampa\, DSW\, LCSW-C! \n  \nDevon Ciampa\, DSW\, LCSW-C\, has dedicated her career to supporting adolescents and young adults navigating crises\, both in the U.S. and internationally. After working in educational development throughout Asia\, she returned to the United States to work on program development for youth aging out of the child welfare system as well as for unaccompanied refugee minors in foster care. Shifting to social work\, Dr. Ciampa gained experience in medical settings at Children’s National Medical Center in Washington D.C. followed by Johns Hopkins Hospital in Baltimore\, MD\, where she served as the clinical social worker and adolescent and young adult (AYA) navigator for oncology patients between the ages of 15 and 28. Currently\, she is the first AYA Navigator and Program Coordinator at the National Institutes of Health Clinical Center tasked with building a comprehensive program across NIH institutes for patients ages 15 to 40. Dr. Ciampa regularly presents on AYA psychosocial needs and has a therapy practice dedicated to young adults. Dr. Ciampa holds two advanced degrees from Columbia University and recently received her doctorate from the University of Pennsylvania with a focus on advanced care planning for emerging adults. \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/july-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/06/build-a-support-network-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250611T193000
DTEND;TZID=America/New_York:20250611T203000
DTSTAMP:20260508T103225
CREATED:20240605T174457Z
LAST-MODIFIED:20240605T174457Z
UID:10000096-1749670200-1749673800@vhl.org
SUMMARY:June 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 \n“What are your worries related to VHL/vision loss and how do you handle 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. 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/june-low-no-vision-call-2025/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/June-11-What-are-your-worries-related-to-VHL-_-vision-loss-and-how-do-you-handle-them.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250602T200000
DTEND;TZID=America/New_York:20250602T210000
DTSTAMP:20260508T103225
CREATED:20240605T171608Z
LAST-MODIFIED:20240605T171608Z
UID:10000084-1748894400-1748898000@vhl.org
SUMMARY:June 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:\nLearn how to ask for help with less guilt from health care providers and loved ones \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/june-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/June-2-Learn-how-to-ask-for-help-with-less-guilt.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250519T200000
DTEND;TZID=America/New_York:20250519T210000
DTSTAMP:20260508T103225
CREATED:20240605T194133Z
LAST-MODIFIED:20240605T194133Z
UID:10000102-1747684800-1747688400@vhl.org
SUMMARY:May Parents of VHL Patients Call
DESCRIPTION:Third Monday of every other month. \nPlease join us on the third Monday every other month to discuss how we can help our children thrive with VHL. \n  \nOur topic\n“How to navigate the challenging emotions that come with having a child with a chronic illness (and how to know when we aren’t doing that well).” \n  \nAll parents of VHL patients 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 third Monday of every other month at 8 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. \n 
URL:https://vhl.org/vhla-event/may-parents-of-vhl-patients-call-2025/
LOCATION:Zoom / Online
CATEGORIES:Parents of VHL Patients Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/May-18-How-to-navigate-the-challenging-emotions-that-come-with-having-a-child-with-chronic-disease.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250514T193000
DTEND;TZID=America/New_York:20250514T203000
DTSTAMP:20260508T103225
CREATED:20240605T174344Z
LAST-MODIFIED:20240605T174344Z
UID:10000095-1747251000-1747254600@vhl.org
SUMMARY:May 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 \n“Decision Fatigue” \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/may-low-no-vision-call-2025/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/May-14-Decision-Fatigue.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250505T200000
DTEND;TZID=America/New_York:20250505T210000
DTSTAMP:20260508T103225
CREATED:20240605T171458Z
LAST-MODIFIED:20240605T171458Z
UID:10000083-1746475200-1746478800@vhl.org
SUMMARY:May 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:\nCreate healthy boundaries so you can increase your health \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/may-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/May-5-Create-healthy-boundaries-to-increase-your-health.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250409T193000
DTEND;TZID=America/New_York:20250409T203000
DTSTAMP:20260508T103225
CREATED:20240605T174240Z
LAST-MODIFIED:20240605T174240Z
UID:10000094-1744227000-1744230600@vhl.org
SUMMARY:April 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 \n“What stories do you tell yourself about your illness\, your disability\, yourself? How do those stories serve or hinder you\, and can those stories be changed?” \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/april-low-no-vision-call-2025/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/April-9th-What-stories-do-you-tell-yourself-about-your-illness-your-disability-yourself.jpg
END:VEVENT
END:VCALENDAR