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METHOD:PUBLISH
X-ORIGINAL-URL:http://vhl.org
X-WR-CALDESC:Events for VHL Alliance
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TZID:America/New_York
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DTSTART:20240310T070000
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DTSTART:20241103T060000
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250804T200000
DTEND;TZID=America/New_York:20250804T210000
DTSTAMP:20260625T064857
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:http://vhl.org/vhla-event/august-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/july-low-no-vision-call-2025/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/july-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/june-low-no-vision-call-2025/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/june-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/may-parents-of-vhl-patients-call-2025/
LOCATION:Zoom / Online
CATEGORIES:Parents of VHL Patients Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/may-low-no-vision-call-2025/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/may-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/april-low-no-vision-call-2025/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/april-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/march-parents-of-vhl-patients-call-2025/
LOCATION:Zoom / Online
CATEGORIES:Parents of VHL Patients Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/march-low-no-vision-call-2025/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/mar-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:http://vhl.org/wp-content/uploads/2024/06/March-3-Learn-mindfulness-techniques-to-reduce-constant-pain.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250212T193000
DTEND;TZID=America/New_York:20250212T203000
DTSTAMP:20260625T064857
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:http://vhl.org/vhla-event/feb-low-no-vision-call-2025/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/feb-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/jan-parents-of-vhl-patients-call-2025/
LOCATION:Zoom / Online
CATEGORIES:Parents of VHL Patients Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/jan-low-no-vision-call-2025/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/jan-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/dec-low-no-vision-call-2024/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/dec-patient-caregiver-call-2024/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/november-parents-of-vhl-patients-call-2024/
LOCATION:Zoom / Online
CATEGORIES:Parents of VHL Patients Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://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:http://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:20260625T064857
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:http://vhl.org/vhla-event/nov-low-no-vision-call-2024/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:http://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:20260625T064857
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:http://vhl.org/vhla-event/nov-patient-caregiver-call-2024/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:http://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
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241009T193000
DTEND;TZID=America/New_York:20241009T203000
DTSTAMP:20260625T064857
CREATED:20240605T173547Z
LAST-MODIFIED:20240605T173547Z
UID:10000088-1728502200-1728505800@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 \n“How does blindness add to mental health challenges? What practices\, courses\, books\, etc. have you found helpful” \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:http://vhl.org/vhla-event/oct-low-no-vision-call-2024/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:http://vhl.org/wp-content/uploads/2024/06/Oct-9-How-does-blindness-add-to-mental-health-challenges-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241007T200000
DTEND;TZID=America/New_York:20241007T210000
DTSTAMP:20260625T064857
CREATED:20240605T170735Z
LAST-MODIFIED:20240605T170735Z
UID:10000076-1728331200-1728334800@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:\nHow to increase positive emotions to lessen the intense negative ones. \n  \nIf you would like to join the call list please click here to register. \n 
URL:http://vhl.org/vhla-event/oct-patient-caregiver-call-2024/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:http://vhl.org/wp-content/uploads/2024/06/Oct-7th-How-to-increase-positive-emotions.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240916T200000
DTEND;TZID=America/New_York:20240916T210000
DTSTAMP:20260625T064857
CREATED:20240605T193648Z
LAST-MODIFIED:20240606T172411Z
UID:10000098-1726516800-1726520400@vhl.org
SUMMARY:September 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“Find out how what you believe about VHL and its impact on you can increase or decrease your child’s health outcomes and what you can do about it.” \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:http://vhl.org/vhla-event/sept-parents-of-vhl-patients-call-2024/
LOCATION:Zoom / Online
CATEGORIES:Parents of VHL Patients Call
ATTACH;FMTTYPE=image/jpeg:http://vhl.org/wp-content/uploads/2024/06/Sept-15-how-your-beliefs-can-impact-your-childs-health-outcomes.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240911T193000
DTEND;TZID=America/New_York:20240911T203000
DTSTAMP:20260625T064857
CREATED:20240605T173304Z
LAST-MODIFIED:20240605T173304Z
UID:10000087-1726083000-1726086600@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 \n“How do we maintain our physical health with VHL and vision loss?” \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:http://vhl.org/vhla-event/sept-low-no-vision-call-2024/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:http://vhl.org/wp-content/uploads/2024/06/Sept-11-How-do-we-maintain-our-physical-health-despite-vhl-and-vision-loss.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240909T200000
DTEND;TZID=America/New_York:20240909T210000
DTSTAMP:20260625T064857
CREATED:20240605T170630Z
LAST-MODIFIED:20240605T170630Z
UID:10000075-1725912000-1725915600@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. Please note that this call has been delayed one week due to Labor Day.  \n  \nCall topic:\nIncrease your wellbeing by increasing your sense of happiness despite extremely stressful circumstances. \n  \nIf you would like to join the call list please click here to register. \n 
URL:http://vhl.org/vhla-event/sept-patient-caregiver-call-2024/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:http://vhl.org/wp-content/uploads/2024/06/Sept-9th-Increase-your-sense-of-happiness.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240814T193000
DTEND;TZID=America/New_York:20240814T203000
DTSTAMP:20260625T064857
CREATED:20240605T173101Z
LAST-MODIFIED:20240605T173117Z
UID:10000086-1723663800-1723667400@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 \n“What is the Best Advice about VHL or Vision Loss That You Have Given or Received?” \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:http://vhl.org/vhla-event/aug-low-no-vision-call-2024/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:http://vhl.org/wp-content/uploads/2024/06/Aug-14-What-is-the-best-advice-about-vhl-or-vision-loss-that-you-have-received.jpg
END:VEVENT
END:VCALENDAR