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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260114T193000
DTEND;TZID=America/New_York:20260114T203000
DTSTAMP:20260405T190929
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:20260405T190929
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:20260405T190929
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:20251206T080000
DTEND;TZID=America/New_York:20251206T140000
DTSTAMP:20260405T190929
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:20251201T200000
DTEND;TZID=America/New_York:20251201T210000
DTSTAMP:20260405T190929
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:20260405T190929
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:20260405T190929
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:20260405T190929
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:20260405T190929
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:20260405T190929
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:20260405T190929
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:20260405T190929
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:20260405T190929
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:20260405T190929
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;VALUE=DATE:20250801
DTEND;VALUE=DATE:20250804
DTSTAMP:20260405T190929
CREATED:20241028T172715Z
LAST-MODIFIED:20250721T164225Z
UID:10000104-1754006400-1754265599@vhl.org
SUMMARY:Family Weekend 2025 | Ann Arbor\, Michigan
DESCRIPTION:Can you join us for VHL Family Weekend 2025? \n  \nWhen: August 1-3\, 2025 \nWhere: University of Michigan\, Ann Arbor\, MI \n  \nThe 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. This year\, we’re thrilled to partner with the University of Michigan to host the event in beautiful Ann Arbor. \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 with lived experience 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.\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  \nTickets are available for only $50 – Click here to secure your spot! \n  \n\nPlease note that we require a registration for every person who plans to attend Family Weekend\nYour ticket price includes a welcome dinner on Friday night and additional activities throughout the weekend!\n\n  \nFRIDAY \nCheck in at The Graduate\, 615 E. Huron St\, Ann Arbor\, MI 48104 (855-605-0316) \nWhen checking in\, please look for us in the hotel lobby. We’ll have a general schedule for you\, as well as your name badge for the weekend.  \n  \n“The Big House” Tour  \nTransportation to the UM Stadium will leave promptly from the hotel lobby at 4:30 PM.  The tour is approximately 1-1.5 hours long. Transportation to the stadium\, and onto the Welcome Tailgate will be provided. If you are staying at a different location\, are a local\, or prefer to use your own transportation\, please meet at the Jack Roth Stadium Club Entrance on the east side of the Stadium just north of Crisler Center. Please Note: The tour is at capacity so only those who confirmed their attendance will be admitted on the tour.  \n  \n6:30 PM Welcome Dinner Tailgate: BURNS PARK 1300 Baldwin Ave\, Ann Arbor\, MI 48104 (enter at the corner of Wells and Baldwin) \nTailgating fun begins at 6:30 PM. Traditional BBQ fixings\, and other snacks\, will kick off an evening of fun and community. If you attend the tour\, transportation to Burns Park will be provided.  \n**If you are not attending the tour\, but are attending the Welcome Tailgate\, pick-up will be at 6:10 outside The Graduate lobby.  Transportation will be provided to The Graduate at the conclusion of the event.** \n  \nSATURDAY \n8:30 AM University of Michigan: Palmer Commons 100 Washtenaw Ave\, Ann Arbor\, MI 48109\,  Great Lakes Room 4th Fl \n  \nTransportation will not be provided from The Graduate to the UM\, as it is within walking distance. However\, those who have noted mobility exceptions will be driven to Palmer Commons by staff\, and we will depart promptly at 8:15 AM.   \n  \nParking is available in the Palmer Drive Parking Structure. Parking vouchers will be provided.  \nA light breakfast will be provided from 8:30\, with presentations beginning at 9 AM. Youth will depart for their day of fun at approximately 9:45. (Please see below for detailed information on their schedule).  Please be aware that there will be photography\, video\, and seminar recording throughout the day. Presentations will conclude at 3:30 PM \n  \nKids programming\, Chaperoned by UM Genetic Counseling Program Volunteers; departing Palmer Commons at 9:45 AM \nKids 10 and under: \n10:00 Hands-On Museum of Ann Arbor\n12:15 Lunch\n12:45 University of Michigan Museum of Natural History\n1 PM Planetarium-The Sky Tonight\n2 PM (Optional) T-Rex\n3:30 Return to Palmer Commons \n  \nTeens:\n10:00 Launch Family Entertainment\n12:15 Lunch\n1:00 University of Michigan Museum of Natural History\n1 PM Planetarium-The Sky Tonight\n2 PM (Optional) T-Rex\n3:30 Return to Palmer Commons \n  \nSUNDAY \n9 AM The Graduate\, 615 E Huron\, Ann Arbor\, MI 48109 \n  \nThe day will begin with an optional 7:30 Yoga class on the terrace\, followed by the Community Breakfast at 9 AM.  We have a great lineup of speakers and sessions for the final morning of the event. We will conclude at Noon\, with a boxed lunch for your travels! \n  \nLodging: \nWe recommend staying at The Graduate hotel in Ann Arbor. \n  \n*Please note that we cannot guarantee that we can accommodate dietary requests received after July 7th* \n  \nMark your calendars\, and stay tuned for more details\, including the agenda and guest speakers. We can’t wait to see you there! \n  \nWant to attend VHL Family Weekend 2025 in Ann Arbor\, Michigan\, but worried about travel costs? We’re here to help! \nThe VHL Alliance is offering travel scholarships of up to $500 to help make this special weekend accessible to as many families as possible. Apply by June 12 to be considered. Click here to apply now! \n  \nPlease direct any questions about this event to info@vhl.org \n  \n      \n  \nThis event is brought to you with support from  \n  \n \n  \n \n  \n \n  \n \n 
URL:https://vhl.org/vhla-event/family-weekend-2025-ann-arbor-michigan/
CATEGORIES:In Person Event
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/10/Family-Weekend-2025-Promo-University-of-Michigan-3.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250709T193000
DTEND;TZID=America/New_York:20250709T203000
DTSTAMP:20260405T190929
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:20260405T190929
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:20250614T090000
DTEND;TZID=America/New_York:20250614T130000
DTSTAMP:20260405T190929
CREATED:20250429T084039Z
LAST-MODIFIED:20250502T143416Z
UID:10000109-1749891600-1749906000@vhl.org
SUMMARY:VHL Connect | Mass General
DESCRIPTION:
URL:https://vhl.org/vhla-event/vhl-connect-mass-general/
LOCATION:Mass General\, 185 Cambridge St\, Boston\, MA\, 02114\, United States
CATEGORIES:In Person Event
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/04/vhl-connect-boston.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250611T193000
DTEND;TZID=America/New_York:20250611T203000
DTSTAMP:20260405T190929
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:20250609T190000
DTEND;TZID=America/New_York:20250609T190000
DTSTAMP:20260405T190929
CREATED:20250521T141328Z
LAST-MODIFIED:20250527T190641Z
UID:10000110-1749495600-1749495600@vhl.org
SUMMARY:Charla Informativa con Dr. Alejandro Sanchez sobre Von Hippel-Lindau\, con Preguntas y Respuestas  | VHL Informational Session and Q&A with Dr. Alejandro Sanchez [IN SPANISH]
DESCRIPTION:English description to follow!  \n  \n¡Hola\, miembros de la comunidad de VHLA! \n  \nNos complace anunciar que la Alianza VHL y el Dr. Alejandro Sánchez\, del Instituto Oncológico Huntsman\, ofrecerán un seminario web el 9 de junio de 2025 a las 19:00 h (hora del este). El Dr. Sánchez abordará todos los temas relacionados con la VHL\, desde los fundamentos hasta el tratamiento\, y desde la vigilancia hasta la investigación. El seminario web se realizará en español\, con subtítulos en inglés disponibles en Zoom. \n  \nTambién habrá tiempo para algunas preguntas\, que se pueden dirigir a paula.hernandez@vhl.org con el asunto: Preguntas y respuestas\, Dr. Sánchez. \n  \nNOTAR: el Dr. Sánchez no ofrecerá asesoramiento médico durante esta sesión. \n  \nREGISTRO \n  \n\n  \nHello VHLA Community Members! \n  \nWe are so excited to share the VHL Alliance and Dr. Alejandro Sanchez\, MD\, of the Huntsman Cancer Institute\, will host a webinar on June 9\, 2025\, at 7:00 pm EST. Dr. Sanchez will discuss all things VHL\, from basics to treatment\, and surveillance to research. The webinar will be conducted in Spanish\, with English subtitles available on Zoom. \n  \nThere will also be time for a few questions\, and you may direct those to paula.hernandez@vhl.org with the subject line: Q&A Dr Sanchez. \n  \nNOTE: Dr. Sanchez will not be giving medical advice during this session. \n  \nRegister here \n  \nThis webinar is brought to you with support from:  \n 
URL:https://vhl.org/vhla-event/charla-informativa-con-dr-alejandro-sanchez-sobre-von-hippel-lindau-con-preguntas-y-respuestas-vhl-informational-session-and-qa-with-dr-alejandro-sanchez-in-spanish/
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/05/Spanish-webinar-promo-image.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250602T200000
DTEND;TZID=America/New_York:20250602T210000
DTSTAMP:20260405T190929
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/Denver:20250531T100000
DTEND;TZID=America/Denver:20250531T140000
DTSTAMP:20260405T190929
CREATED:20250423T194555Z
LAST-MODIFIED:20250502T143505Z
UID:10000108-1748685600-1748700000@vhl.org
SUMMARY:VHL Connect | Huntsman Cancer Institute
DESCRIPTION:
URL:https://vhl.org/vhla-event/vhl-connect-huntsman-cancer-institute/
LOCATION:Huntsman Cancer Institute\, 1950 Circle of Hope\, Salt Lake City\, UT\, 84112\, United States
CATEGORIES:In Person Event
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/04/Family-Weekend-2025-Promo-University-of-Michigan-4.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250519T200000
DTEND;TZID=America/New_York:20250519T210000
DTSTAMP:20260405T190929
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:20250516T100000
DTEND;TZID=America/New_York:20250516T140000
DTSTAMP:20260405T190929
CREATED:20250310T175631Z
LAST-MODIFIED:20250502T143624Z
UID:10000106-1747389600-1747404000@vhl.org
SUMMARY:VHL Connect | Penn Medicine
DESCRIPTION:
URL:https://vhl.org/vhla-event/vhl-connect-penn-medicine/
LOCATION:Penn Medicine\, 3400 Civic Center Blvd\, Philadelphia\, PA\, 19104\, United States
CATEGORIES:In Person Event
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/03/2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250514T193000
DTEND;TZID=America/New_York:20250514T203000
DTSTAMP:20260405T190929
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:20260405T190929
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:20250503T090000
DTEND;TZID=America/New_York:20250503T140000
DTSTAMP:20260405T190929
CREATED:20250310T180151Z
LAST-MODIFIED:20250310T180900Z
UID:10000107-1746262800-1746280800@vhl.org
SUMMARY:VHL Connect | MD Anderson
DESCRIPTION:
URL:https://vhl.org/vhla-event/vhl-connect-md-anderson/
LOCATION:MD Anderson\, 1515 Holcombe Blvd.\, Houston\, TX\, 77030\, United States
CATEGORIES:In Person Event
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/03/3.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250409T193000
DTEND;TZID=America/New_York:20250409T203000
DTSTAMP:20260405T190929
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
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250407T200000
DTEND;TZID=America/New_York:20250407T210000
DTSTAMP:20260405T190929
CREATED:20240605T171401Z
LAST-MODIFIED:20240605T171401Z
UID:10000082-1744056000-1744059600@vhl.org
SUMMARY:April 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:\nHow to navigate the vulnerability of VHL. \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/april-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/April-7-How-to-navigate-the-vulnerability-of-VHL.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250317T200000
DTEND;TZID=America/New_York:20250317T210000
DTSTAMP:20260405T190929
CREATED:20240605T194005Z
LAST-MODIFIED:20240605T194025Z
UID:10000101-1742241600-1742245200@vhl.org
SUMMARY:March 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“Creating healthy relationships with good communication skills.” \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/march-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/Mar-16-Creating-healthy-relationships-with-good-communication-skills.jpg
END:VEVENT
END:VCALENDAR