BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//VHL Alliance - ECPv6.13.2.1//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:VHL Alliance
X-ORIGINAL-URL:https://vhl.org
X-WR-CALDESC:Events for VHL Alliance
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20230312T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20231105T060000
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END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230302T190000
DTEND;TZID=America/New_York:20230302T200000
DTSTAMP:20260406T024353
CREATED:20230123T203835Z
LAST-MODIFIED:20230124T180317Z
UID:10000013-1677783600-1677787200@vhl.org
SUMMARY:New Patient / Caregiver Cohort Program
DESCRIPTION:  \nRecently diagnosed? Join us for our four week New Patient Cohort! This program will allow you to… \n  \n\nMeet other VHL patients and caregivers and developed a personal support network\nLearn more about VHL disease from VHL experts\nLearn about the VHL Surveillance Guidelines and why they are important\nLearn about the importance of VHL-experienced clinical care and the CCC program\nLearn about resilience\, how to practice self-care and where to find support\nLearn how to be a better self-advocate and share your story\nLearn where to find available VHLA and external resources\nLearn how to get involved with VHLA and contribute to the VHL community\n\n  \nWeek 1 (February 23rd) – Welcome and What is VHL? \n\nWelcome and introductions\nVHL 101 and Research Discussion\n\n  \nWeek 2 (March 2nd) – Self-Care\, Self-Advocacy\, and Support \n\nWhat is self-care and why is it important?\nDealing with Stress and Anxiety\nFacing adversity and fostering resilience\nBeing a self-advocate\n“Elevator Pitch” – Communicating with those around you\n\n  \nWeek 3 (March 9th) – VHL Veterans Panel \n\nPanel discussion with VHL patients – “Ask the VHL Veterans”\n\n  \nWeek 4 (March 16th) – Available Resources and Getting Involved \n\nHow to find available resources\nVHLA resources\nExternal resources\nVolunteer opportunities\nUpcoming Events\nFeedback\n\n  \n  \nRegister Here
URL:https://vhl.org/vhla-event/new-patient-cohort-program/2023-03-02/
LOCATION:Zoom / Online
CATEGORIES:Workshop
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2023/01/new-patient-cohort-image.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230224
DTEND;VALUE=DATE:20230227
DTSTAMP:20260406T024353
CREATED:20221230T135408Z
LAST-MODIFIED:20230201T142014Z
UID:10000004-1677196800-1677455999@vhl.org
SUMMARY:2023 Julie Flynn HOPE Retreat for Young Adults
DESCRIPTION:  \nAre you a young adult with VHL? If so\, join other young adults for a weekend of fun and information! We’re excited to get together in person after our digital event last year. \nParticipants must cover transportation costs to and from DC. VHLA will cover the cost of lodging\, meals\, and activities for the weekend. \nScholarships are available for those who need assistance covering travel costs. My info coming soon. \nDate: 2/24-2/26\nLocation: Washington\, DC\nCost: $70 on or before 1/27; $100 after \nRegister Here \n  \nThis event would not be possible without the support of our generous sponsors: \n  \n \n 
URL:https://vhl.org/vhla-event/2023-julie-flynn-hope-retreat-for-young-adults/
LOCATION:Washington DC\, Washington DC\, DC\, United States
CATEGORIES:In Person Event
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2022/12/20190615_161938-2-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230223T190000
DTEND;TZID=America/New_York:20230223T203000
DTSTAMP:20260406T024353
CREATED:20230123T203835Z
LAST-MODIFIED:20230124T180317Z
UID:10000012-1677178800-1677184200@vhl.org
SUMMARY:New Patient / Caregiver Cohort Program
DESCRIPTION:  \nRecently diagnosed? Join us for our four week New Patient Cohort! This program will allow you to… \n  \n\nMeet other VHL patients and caregivers and developed a personal support network\nLearn more about VHL disease from VHL experts\nLearn about the VHL Surveillance Guidelines and why they are important\nLearn about the importance of VHL-experienced clinical care and the CCC program\nLearn about resilience\, how to practice self-care and where to find support\nLearn how to be a better self-advocate and share your story\nLearn where to find available VHLA and external resources\nLearn how to get involved with VHLA and contribute to the VHL community\n\n  \nWeek 1 (February 23rd) – Welcome and What is VHL? \n\nWelcome and introductions\nVHL 101 and Research Discussion\n\n  \nWeek 2 (March 2nd) – Self-Care\, Self-Advocacy\, and Support \n\nWhat is self-care and why is it important?\nDealing with Stress and Anxiety\nFacing adversity and fostering resilience\nBeing a self-advocate\n“Elevator Pitch” – Communicating with those around you\n\n  \nWeek 3 (March 9th) – VHL Veterans Panel \n\nPanel discussion with VHL patients – “Ask the VHL Veterans”\n\n  \nWeek 4 (March 16th) – Available Resources and Getting Involved \n\nHow to find available resources\nVHLA resources\nExternal resources\nVolunteer opportunities\nUpcoming Events\nFeedback\n\n  \n  \nRegister Here
URL:https://vhl.org/vhla-event/new-patient-cohort-program/2023-02-23/
LOCATION:Zoom / Online
CATEGORIES:Workshop
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2023/01/new-patient-cohort-image.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230223T130000
DTEND;TZID=America/New_York:20230223T143000
DTSTAMP:20260406T024353
CREATED:20230123T194146Z
LAST-MODIFIED:20230124T144043Z
UID:10000011-1677157200-1677162600@vhl.org
SUMMARY:Navigating Tough Conversations Workshop
DESCRIPTION:  \nNo one likes conflict. Having VHL can feel very stressful and that can strain relationships\, erode healthy communication\, and increase the likelihood of conflict. \n  \nWhat if you could navigate tough conversations with greater expertise or avoid having conflict? \n  \nJoin this session to discover research-based tools that you can implement immediately to improve your communication skills and bring harmony to your relationships. \n\nClick here to register
URL:https://vhl.org/vhla-event/navigating-tough-conversations-workshop/
LOCATION:Zoom / Online
CATEGORIES:Workshop
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2023/01/Leona-Workshop-Template-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230214T080000
DTEND;TZID=America/New_York:20230214T090000
DTSTAMP:20260406T024353
CREATED:20230201T143550Z
LAST-MODIFIED:20230201T143550Z
UID:10000016-1676361600-1676365200@vhl.org
SUMMARY:VHLentine's Day
DESCRIPTION:
URL:https://vhl.org/vhla-event/vhlentines-day/
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2023/02/vhlentines-2023.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230208T193000
DTEND;TZID=America/New_York:20230208T203000
DTSTAMP:20260406T024353
CREATED:20230123T193128Z
LAST-MODIFIED:20230328T165308Z
UID:10000009-1675884600-1675888200@vhl.org
SUMMARY:February Low/No Vision Monthly Call
DESCRIPTION:Second Wednesday of every month \nLiving with low or no vision creates unique challenges for VHLers. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. \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! \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 email us at calls@vhl.org.
URL:https://vhl.org/vhla-event/low-no-vision-monthly-call-feb/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2023/01/low-no-vision-call.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230206T200000
DTEND;TZID=America/New_York:20230206T210000
DTSTAMP:20260406T024353
CREATED:20230123T193032Z
LAST-MODIFIED:20230208T164624Z
UID:10000008-1675713600-1675717200@vhl.org
SUMMARY:February VHL Patient/Caregiver Call
DESCRIPTION:First Monday of every month. \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! \nThis facilitated call takes place on the first Monday of every month at 8 PM ET. \nIf you would like to join the call list\, please send us an email at calls@vhl.org
URL:https://vhl.org/vhla-event/vhl-patient-caregiver-call-feb/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2023/01/patient-cg-call.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230123T200000
DTEND;TZID=America/New_York:20230123T210000
DTSTAMP:20260406T024353
CREATED:20221230T141306Z
LAST-MODIFIED:20230324T154002Z
UID:10000006-1674504000-1674507600@vhl.org
SUMMARY:Parents of VHL Patients Call
DESCRIPTION:Third Monday of every other month (Delayed 1 week in Jan. due to MLK Day) \nPlease join us on the third Monday every other month to discuss how we can help our children thrive with VHL. \nAll parents of VHLers 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! \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 email us at calls@vhl.org
URL:https://vhl.org/vhla-event/parents-of-vhlers-call/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2022/12/event-placeholder.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230111T193000
DTEND;TZID=America/New_York:20230111T203000
DTSTAMP:20260406T024353
CREATED:20221230T141228Z
LAST-MODIFIED:20230328T165316Z
UID:10000005-1673465400-1673469000@vhl.org
SUMMARY:Low/No Vision Monthly Call
DESCRIPTION:Second Wednesday of every month \nLiving with low or no vision creates unique challenges for VHLers. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. \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! \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 email us at calls@vhl.org.
URL:https://vhl.org/vhla-event/low-no-vision-monthly-call/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2022/12/event-placeholder.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230109T200000
DTEND;TZID=America/New_York:20230109T210000
DTSTAMP:20260406T024353
CREATED:20221230T141401Z
LAST-MODIFIED:20221230T141441Z
UID:10000007-1673294400-1673298000@vhl.org
SUMMARY:VHL Patient/Caregiver Call
DESCRIPTION:First Monday of every month (Delayed 1 week in Jan. due to New Years holiday) \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! \nThis facilitated call takes place on the first Monday of every month at 8 PM ET. \nIf you would like to join the call list\, please send us an email at calls@vhl.org
URL:https://vhl.org/vhla-event/patient-caregiver-call/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2022/12/event-placeholder.jpg
END:VEVENT
END:VCALENDAR