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X-WR-CALDESC:Events for VHL Alliance
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DTSTART:20250309T070000
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DTSTART;TZID=America/New_York:20250707T200000
DTEND;TZID=America/New_York:20250707T210000
DTSTAMP:20260405T202930
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
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DTSTART;TZID=America/New_York:20250709T193000
DTEND;TZID=America/New_York:20250709T203000
DTSTAMP:20260405T202930
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
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