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X-WR-CALNAME:Cystinosis Research Network
X-ORIGINAL-URL:https://cystinosis.org
X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART:20190101T000000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20200815
DTEND;VALUE=DATE:20200816
DTSTAMP:20200814T184450Z
CREATED:20200806T065341Z
LAST-MODIFIED:20200814T184450Z
UID:2496-1597449600-1597535999@cystinosis.org
SUMMARY:Podcast: Youth to Adult Transition (part 1)
DESCRIPTION:Youth to Adult Transition Part 1- Discussion with Medical Professionals \nThe third podcast from the ALAB will focus on transitioning from youth to adult medical care. Part one of the youth to adult transition conversation begins with the healthcare professional opinion. Join us and special guests Dr. Paul Grimm from Lucile Packard Children’s Hospital and Stanford University of Medicine and Dori Rivera\, PAM (Patient Access Manager) from Horizon Therapeutics. \nHosts from the Adult Leadership Advisory Board (ALAB) are Jana Healy\, Sara Healy\, Steve Schleuder\, Cheryl Simoens. \nBeginning August 15\,2020 at 9am ET\, this link will go live and connect you to the podcast via YouTube: https://youtu.be/zEMdQmxR0UU. \nThank you for your interest.
URL:https://cystinosis.org/event/podcast-youth-to-adult-transition-part-1/
LOCATION:MI
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DTSTART;TZID=UTC:20240531T074500
DTEND;TZID=UTC:20240531T191500
DTSTAMP:20240528T202402Z
CREATED:20240220T214443Z
LAST-MODIFIED:20240528T202402Z
UID:4631-1717141500-1717182900@cystinosis.org
SUMMARY:Cystinosis Symposium: A Rare Disease Model for Comprehensive Care
DESCRIPTION:The CRN is hosting an in-person event for healthcare professionals. \nJoin us May 31\, 2024 at The New York Academy of Medicine. \nHealthcare providers with a desire to learn more about comprehensive care in rare disease are encouraged to attend. Registration includes meals\, refreshments and cocktail hour. See the draft agenda and register below to secure your spot now for this pivotal event! See overview below.  \n\n \n \n\nAgenda\n \n\n \n \n\nRegister Today\n\n\n\n \n\nEvent Flyer\n\n\n\n \n\nSpeaker Bios\n\n \n\n\n \nOverview\nReview the latest advances in our understanding of cellular and molecular abnormalities in nephropathic cystinosis\, which have led to three major breakthroughs. We’ll explore the implementation of effective treatments for interrupting disease progression from childhood to adulthood\, and the exciting potential of cutting-edge gene therapies to eradicate this lifelong condition.\n \nDespite these promising developments\, substantial gaps and challenges persist in providing comprehensive care to cystinosis patients and families. Learn how earlier genetic recognition and timely diagnosis can make a difference. Find out how we’re bridging the gap to construct multidisciplinary healthcare teams extending from primary care to specialized support\, including social work\, nutritionists\, educators\, and quality of life navigators.\n \nBe a part of this transformative conference\, one of the first to address these glaring deficiencies in cystinosis care. Together\, we’ll focus on themes that apply to healthcare providers\, educators\, and families\, and work towards disseminating new information and raising awareness within the cystinosis community. Our ultimate goal is to provide an algorithm for more effectively navigating the promising future towards a cure.\n \n \nA special thank you to our sponsors: \n \n \n \n \n \n \n \n \n\n 
URL:https://cystinosis.org/event/cystinosis-symposium-a-rare-disease-model-for-comprehensive-care/
LOCATION:The New York Academy of Medicine\, 1216 5th Ave\, New York\, NY\, 10029\, United States
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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