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DTSTART;VALUE=DATE:20250801
DTEND;VALUE=DATE:20250804
DTSTAMP:20260405T185130
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:20260405T185130
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:20260405T185130
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:20260405T185130
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:20260405T185130
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:20260405T185130
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:20260405T185130
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:20260405T185130
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:20260405T185130
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:20260405T185130
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:20260405T185130
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:20260405T185130
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:20260405T185130
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:20260405T185130
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:20260405T185130
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:20260405T185130
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
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250312T193000
DTEND;TZID=America/New_York:20250312T203000
DTSTAMP:20260405T185130
CREATED:20240605T174126Z
LAST-MODIFIED:20240605T174126Z
UID:10000093-1741807800-1741811400@vhl.org
SUMMARY:March 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“How do blindness and VHL affect our closest relationships? It can seem like our bodies\, and therefore our needs and abilities\, are constantly changing. How does that change our relationships with those closest to us: spouses\, parents\, children\, 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/march-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/March-12-How-does-blindness-and-VHL-effect-our-closest-relationships.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250303T200000
DTEND;TZID=America/New_York:20250303T210000
DTSTAMP:20260405T185130
CREATED:20240605T171257Z
LAST-MODIFIED:20240605T171257Z
UID:10000081-1741032000-1741035600@vhl.org
SUMMARY:March 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 mindfulness techniques that reduce persistent pain (physically or mentally) and create a sense of peace and control. \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/mar-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/March-3-Learn-mindfulness-techniques-to-reduce-constant-pain.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250228
DTEND;VALUE=DATE:20250303
DTSTAMP:20260405T185130
CREATED:20241113T150928Z
LAST-MODIFIED:20241113T154814Z
UID:10000105-1740700800-1740959999@vhl.org
SUMMARY:VHL Alliance Young Adult Retreat | Phoenix\, AZ
DESCRIPTION:  \nCalling all young adults (ages 21-36) impacted by VHL! Join us in Phoenix\, Arizona\, from February 28th to March 2nd\, 2025\, for the Young Adult Retreat hosted by the VHL Alliance in partnership with the Mayo Clinic in Scottsdale. This weekend is designed for young adults with VHL to connect\, learn\, and build a supportive community. \n  \nThroughout the weekend you’ll have the chance to engage directly with VHL experts\, gain insights into the latest in VHL care\, and connect with other young adults who understand the unique challenges of living with VHL. Whether it’s through educational sessions\, group discussions\, or casual conversations\, this event is crafted to empower and inspire you. \n  \nThis year\, our focus will shift from medical presentations to exploring the psychosocial side of living with VHL. The Young Adult Retreat will feature facilitated group discussions\, engaging workshops\, and supportive sessions that dive into topics like resilience\, coping strategies\, navigating insurance coverage\, and building a balanced life with VHL. It’s an opportunity to share experiences\, ask questions\, and gain a deeper understanding of how to thrive both personally and socially. Detailed schedule and lodging information to come soon! \n  \nRegistration Details\nThe registration fee is $75 and covers all accommodations\, meals\, and activities for the weekend. Financial assistance is available for travel costs through our scholarship program—simply reach out to Josh Mann at josh.mann@vhl.org to learn more. \n  \nClick here to register!
URL:https://vhl.org/vhla-event/vhl-alliance-young-adult-retreat-phoenix-az/
CATEGORIES:In Person Event
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/11/YAR-2025-Promo-Image.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250212T193000
DTEND;TZID=America/New_York:20250212T203000
DTSTAMP:20260405T185130
CREATED:20240605T173959Z
LAST-MODIFIED:20240605T173959Z
UID:10000092-1739388600-1739392200@vhl.org
SUMMARY:February 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 two things does blindness make most difficult for you and what workarounds have you found for 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/feb-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/Feb-12-What-two-things-does-blindness-make-most-difficult-for-you.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250203T200000
DTEND;TZID=America/New_York:20250203T210000
DTSTAMP:20260405T185130
CREATED:20240605T171144Z
LAST-MODIFIED:20240605T171144Z
UID:10000080-1738612800-1738616400@vhl.org
SUMMARY:February 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 three ways to be more resilient. \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/feb-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Feb-3rd-Three-ways-to-be-more-resilient.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250120T200000
DTEND;TZID=America/New_York:20250120T210000
DTSTAMP:20260405T185130
CREATED:20240605T193911Z
LAST-MODIFIED:20240605T193911Z
UID:10000100-1737403200-1737406800@vhl.org
SUMMARY:January 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 increase positive emotions in your child to lessen the intense negative ones.” \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/jan-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/Jan-19-How-to-increase-positive-emotions-in-your-child-and-lessen-negative-emotions.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250108T193000
DTEND;TZID=America/New_York:20250108T203000
DTSTAMP:20260405T185130
CREATED:20240605T173900Z
LAST-MODIFIED:20240605T173900Z
UID:10000091-1736364600-1736368200@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 \n“How do we stand up for ourselves and each other?” \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/jan-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/Jan-8-How-do-we-stand-up-for-ourselves-and-each-other.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250106T200000
DTEND;TZID=America/New_York:20250106T210000
DTSTAMP:20260405T185130
CREATED:20240605T171041Z
LAST-MODIFIED:20240605T171200Z
UID:10000079-1736193600-1736197200@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:\nHow to navigate incessant thoughts that weigh us down. \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-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Jan-6-How-to-navigate-the-incessant-thoughts-that-weigh-us-down.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241211T193000
DTEND;TZID=America/New_York:20241211T203000
DTSTAMP:20260405T185130
CREATED:20240605T173747Z
LAST-MODIFIED:20240605T173747Z
UID:10000090-1733945400-1733949000@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 \n“Holidays and all that comes with them: large gatherings\, chores\, performances\, 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/dec-low-no-vision-call-2024/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Dec-11-Holidays-and-all-that-comes-with-them-chores-family-etc.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241209T200000
DTEND;TZID=America/New_York:20241209T210000
DTSTAMP:20260405T185130
CREATED:20240605T170950Z
LAST-MODIFIED:20241104T155405Z
UID:10000078-1733774400-1733778000@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. *Please note that this call is delayed one week due to a scheduling conflict* \n  \nCall topic:\nCreating healthy relationships with good communication skills \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/dec-patient-caregiver-call-2024/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Dec-2-Creating-healthy-relationships-with-good-communication-skills.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241118T200000
DTEND;TZID=America/New_York:20241118T210000
DTSTAMP:20260405T185130
CREATED:20240605T193817Z
LAST-MODIFIED:20240605T193817Z
UID:10000099-1731960000-1731963600@vhl.org
SUMMARY:November 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“Increase your wellbeing by increasing your sense of happiness despite extremely stressful circumstances.” \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/november-parents-of-vhl-patients-call-2024/
LOCATION:Zoom / Online
CATEGORIES:Parents of VHL Patients Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Nov-17-Increase-your-wellbeing-by-increasing-your-sense-of-happiness-in-stressful-circumstances.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241114T183000
DTEND;TZID=America/New_York:20241114T193000
DTSTAMP:20260405T185130
CREATED:20241008T141354Z
LAST-MODIFIED:20241008T150006Z
UID:10000103-1731609000-1731612600@vhl.org
SUMMARY:Advances in VHL Disease and HIF2a Inhibitors: Insights from Recent Research with Othon Iliopoulos\, MD\, PhD
DESCRIPTION:  \nDate & Time: Nov 14th\, 6:30 pm EST \n  \nLocation: Zoom (Link to be provided upon registration) \n  \nJoin us for an informative webinar featuring renowned VHL researcher Dr. Othon Iliopoulos as he delves into the latest advancements in understanding Von Hippel-Lindau (VHL) disease and the role of HIF2a inhibitors in treatment. \n  \nDr. Iliopoulos will present key insights from his recently published article\, “Updated Findings with Belzutifan in Von Hippel-Lindau Disease-Associated CNS Hemangioblastomas\,” highlighting the significant impacts of belzutifan on patient outcomes. He will discuss the mechanisms of VHL disease\, the role of HIF2a in tumorigenesis\, and the therapeutic potential of HIF2a inhibitors. \n  \nKey Topics: \n\nOverview of VHL disease and its implications\nMechanism of action of HIF2a inhibitors\nRecent clinical findings and their relevance for patient care\nFuture directions in VHL disease research and treatment strategies\n\n  \nThis webinar is an excellent opportunity for healthcare professionals\, researchers\, and anyone interested in the latest developments in VHL disease to engage with Dr. Iliopoulos and gain valuable insights into ongoing research and clinical applications. \n  \nRegister now to secure your spot and be part of this engaging discussion!
URL:https://vhl.org/vhla-event/advances-in-vhl-disease-and-hif2a-inhibitors-insights-from-recent-research-with-othon-iliopoulos-md-phd/
LOCATION:Zoom / Online
CATEGORIES:Workshop
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/10/VHL-101-Research-Update-with-Othon-Iliopoulos-MD.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241113T193000
DTEND;TZID=America/New_York:20241113T203000
DTSTAMP:20260405T185130
CREATED:20240605T173649Z
LAST-MODIFIED:20241024T134217Z
UID:10000089-1731526200-1731529800@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 \n“Preparing for natural disasters with vision impairment.” \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/nov-low-no-vision-call-2024/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/prepping-for-disaster-with-blindness.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241104T200000
DTEND;TZID=America/New_York:20241104T210000
DTSTAMP:20260405T185130
CREATED:20240605T170843Z
LAST-MODIFIED:20240605T170843Z
UID:10000077-1730750400-1730754000@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:\nLearn to understand what truly matters to you and create a plan to create an incredibly rich life-despite all that VHL entails. \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/nov-patient-caregiver-call-2024/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/06/Nov-4th-Learn-to-understand-what-truly-matters-to-you-to-create-a-rich-life.jpg
END:VEVENT
END:VCALENDAR