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X-WR-CALDESC:Events for The Life Raft Group
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DTSTART;TZID=America/New_York:20210210T130000
DTEND;TZID=America/New_York:20210210T130000
DTSTAMP:20210603T135810Z
CREATED:20210119T153745Z
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SUMMARY:Virtual Caregiver Support Group
DESCRIPTION:Weekly Support Group for GIST Caregivers.\nHeld every Wednesday at 1pm ET beginning January 20\, 2021\nAs we continue to navigate this uncertain time together\, we want to offer you a little extra support. Every Wednesday at 1pm ET the LRG has a weekly support group for the caregivers facilitated by Marlene Nei\, GIST Caregiver. To continue social distancing and connecting with caregivers across the United States\, we will use an electronic platform\, to come together every week as a group. We will talk about all the feelings you might be experiencing\, both in relation to GIST\, and COVID-19. \nWe will share our stories\, if you are comfortable\, and speak freely about the new fears and anxieties we might be feeling because of this unprecedented time. The group will be a safe space not only to feel supported by your fellow caregivers\, but also a place to share our own coping mechanisms to get us through this stressful time. All information shared will be kept confidential. Contact Diana Nieves at dnieves@liferaftgroup.org for more information. \nPlease email Diana Nieves at dnieves@liferaftgroup.org to join this meeting.\nAbout the Group Leader:\nMarlene Nei\, GIST Caregiver \nAs an active member of the Life Raft Group\, Marlene advocates for the needs of the caregiver community because she feels they are an underrepresented group. It is her mission to advocate for the entire GIST community making sure they are equipped with the appropriate resources on their GIST journey.
URL:https://liferaftgroup.org/event/virtual-caregiver-support-group-3/2021-02-10/
LOCATION:NJ
CATEGORIES:Events,Support Group
ATTACH;FMTTYPE=image/png:https://liferaftgroup.org/wp-content/uploads/2021/01/Caregiver-Support-Group.png
ORGANIZER;CN="Diana Nieves":MAILTO:dnieves@liferaftgroup.org
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DTSTART;TZID=America/New_York:20210211T120000
DTEND;TZID=America/New_York:20210211T120000
DTSTAMP:20210124T180346Z
CREATED:20201103T133157Z
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SUMMARY:LRG Webcast Series: hPPGL Syndrome - a Misnomer with Consequences
DESCRIPTION:Dr. Annes will review the hPPGL Syndrome with particular focus on the underlying genetics basis and related tumor risks. He will review the benefits/limitations of genetic testing and pre-symptomatic screening\, including his personal experience directing Stanford’s Hereditary Neuroendocrine Neoplasia Clinic. Finally\, he will discuss opportunities for advancing hPPGL care and ongoing research. \nREGISTERPresenter:\nJustin Annes\, MD\, PhD\nAssociate Professor\, Stanford Department of Medicine \nDr. Annes is an Associate Professor in Stanford’s Department of Medicine and a Faculty Fellow in Stanford’s Chemistry\, Engineering & Medicine for Human Health Institute (ChEM-H). He obtained his BS from Haverford College (1996)\, MD PHD from New York University (1996) and trained in Internal Medicine\, Clinical Genetics and Chemical Biology at Brigham and Women’s Hospital / Harvard University (2011). Dr. Annes is director and founder of Stanford’s Hereditary Neuroendocrine Tumor Clinic (2012) which focuses on the longitudinal care of patients and families with inherited endocrine tumor syndromes\, primarily hPPGL\, MEN1 and MEN2. He participates in several neuroendocrine-focused patient advocacy / research foundations including The Pheo Para Alliance\, Neuroendocrine Tumor Research Foundation and the NIH Pediatric Wildtype GIST Clinic. His NIH-funded research program is positioned at the interface of endocrine pathophysiology\, synthetic chemistry and hereditary disease. The organizing principle of his research program is to harness the power of chemistry\, human tissue samples and animal disease models to deliver fundamental biologic insights and develop novel therapeutic leads for the treatment of endocrine disorders.
URL:https://liferaftgroup.org/event/lrg-webcast-hppgl-syndrome/
LOCATION:NJ
CATEGORIES:Education,Events
ATTACH;FMTTYPE=image/jpeg:https://liferaftgroup.org/wp-content/uploads/2020/11/annes1.jpg
ORGANIZER;CN="Sara Rothschild":MAILTO:srothschild@liferaftgroup.org
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