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X-WR-CALDESC:Events for OHF
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DTSTART;TZID=America/New_York:20250627T170000
DTEND;TZID=America/New_York:20250629T200000
DTSTAMP:20260425T233207
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UID:1280-1751043600-1751227200@ohf.org
SUMMARY:In-Person Patient & Family Summit
DESCRIPTION:Join patients\, families\, experts\, researchers\, and clinicians to connect\, learn\, and grow. Get ready for a day filled with inspiration\, learning\, and heartfelt connections. Renowned experts will share their wisdom\, researchers will unveil exciting discoveries\, and compassionate clinicians will be there to guide us. This is your chance to gain the latest insights on hyperoxaluria\, empowering you with knowledge to navigate your journey. Learn more about the event here.
URL:https://ohf.org/event/in-person-patient-family-summit/
LOCATION:Nashville\, TN\, Nashville\, TN
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20230623
DTEND;VALUE=DATE:20230626
DTSTAMP:20260425T233207
CREATED:20220929T202239Z
LAST-MODIFIED:20220929T202239Z
UID:750-1687478400-1687737599@ohf.org
SUMMARY:14th OHF International Hyperoxaluria Workshop
DESCRIPTION:Join the 14th International Hyperoxaluria Workshop\, the largest hyperoxaluria professional and patient event worldwide. The workshop is an unrivaled opportunity to network and exchange invaluable knowledge with all stakeholders in the hyperoxaluria community— patients\, caregivers\, researchers\, clinicians\, and industry representatives. \nPeople living with a rare disease have the right to reach their highest potential of well-being; join us in 2023 to take part in the discussions to better Diagnose\, Discover\, Treat\, Educate and build the future for all with hyperoxaluria.
URL:https://ohf.org/event/14th-ohf-international-hyperoxaluria-workshop/
LOCATION:TN
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230304
DTSTAMP:20260425T233207
CREATED:20220717T193320Z
LAST-MODIFIED:20220717T193433Z
UID:622-1677542400-1677887999@ohf.org
SUMMARY:Rare Disease Week
DESCRIPTION:
URL:https://ohf.org/event/rare-disease-week/
LOCATION:TN
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221112T110000
DTEND;TZID=America/New_York:20221112T140000
DTSTAMP:20260425T233207
CREATED:20220929T202628Z
LAST-MODIFIED:20220929T202628Z
UID:751-1668250800-1668261600@ohf.org
SUMMARY:Virtual Access Webinar &  Patient Workshop
DESCRIPTION:The final event of Hyperoxaluria Awareness Week 2022\, and this year our theme is “ACCESS” Our goal is to highlight the importance of being able to ACCESS the most up-to date hyperoxaluria information and care while spreading awareness for hyperoxaluria and connecting the community.
URL:https://ohf.org/event/virtual-access-webinar-patient-workshop/
LOCATION:TN
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220810T180000
DTEND;TZID=America/New_York:20220810T200000
DTSTAMP:20260425T233207
CREATED:20220717T192337Z
LAST-MODIFIED:20220717T193222Z
UID:620-1660154400-1660161600@ohf.org
SUMMARY:YARR Summer Series Presents LinkedIn
DESCRIPTION:Register through the Young Adult Summer Series: LinkedIn registration page. \nThe final 2022 YARR Summer Series webinar will discuss how to navigate LinkedIn and career development as someone with a rare disease. Speakers TBA.
URL:https://ohf.org/event/620/
LOCATION:TN
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220714
DTEND;VALUE=DATE:20220806
DTSTAMP:20260425T233207
CREATED:20220714T232918Z
LAST-MODIFIED:20220714T232918Z
UID:618-1657756800-1659743999@ohf.org
SUMMARY:Apply to the Young Adult Representatives of RDLA (YARR) Leadership Academy
DESCRIPTION:Apply through the Young Adult Representatives of RDLA (YARR) Leadership Academy \nThe EveryLife Foundation for Rare Diseases is excited to offer the return of the YARR Leadership Academy\, a series of on-line courses offered to a select group of young adults in the rare disease community (ages 18-30). Academy students will learn about the roles and opportunities for patient representation in policy-making\, drug development\, and the regulatory process and the steps it takes to get there. \nYARR Leadership Academy provides a clear pathway for the next generation of young adults who are ready to be leaders in the rare disease community. Patient perspective is vital in closing the innovation gap and ensuring patients have access to safe and effective treatments. Representation matters. To learn more about the YARR Leadership Academy and review the full class schedule\, please click here.\n\n\n\n\n\n\n\n\n\n\nApplications close August 5th\, 2022. \nClasses begin September 28th – November 16th\, 2022.
URL:https://ohf.org/event/apply-to-the-young-adult-representatives-of-rdla-yarr-leadership-academy/
LOCATION:TN
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220311T120000
DTEND;TZID=America/New_York:20220311T130000
DTSTAMP:20260425T233207
CREATED:20220208T194209Z
LAST-MODIFIED:20220310T194609Z
UID:484-1647000000-1647003600@ohf.org
SUMMARY:What’s Causing My Kidney Stones?
DESCRIPTION:Kidney stones are common — if you haven’t had a kidney stone\, you likely know someone who has. Hyperoxaluria\, kidney stones in children and multiple kidneys stones as an adult are not. Learn from two OHF key opinion leaders about causes\, symptoms\, diagnosis and when to take a more in depth look. \nClick to Register \nSpeakers: \nLama Nazzal\, M.D.\nAssistant Professor\nNYU Langone Health\, New York \nKyle Wood\, M.D.\nAssistant Professor\nDepartment of Urology\, University of Alabama\, Birmingham
URL:https://ohf.org/event/whats-causing-my-kidney-stones/
LOCATION:TN
CATEGORIES:Virtual
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220303T120000
DTEND;TZID=America/New_York:20220303T130000
DTSTAMP:20260425T233207
CREATED:20220208T194104Z
LAST-MODIFIED:20220223T230643Z
UID:483-1646308800-1646312400@ohf.org
SUMMARY:Harnessing the Power to Make a Difference!
DESCRIPTION:Hear stories from others in the rare disease space who despite their diagnosis recognized that they could make a difference. No one is more motivated than you to drive progress against your disease. Learn how to make a change and breakdown barriers. You can take the next step! \nClick to Register \nSpeakers: \nAnthony DeVergillo\nInclusive Digital Communicator\nOur Odyssey Board Member \nRob Long\nUplifting Athletes\nExecutive Director
URL:https://ohf.org/event/harnessing-the-power-to-make-a-difference/
LOCATION:TN
CATEGORIES:Virtual
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220228
DTEND;VALUE=DATE:20220301
DTSTAMP:20260425T233207
CREATED:20220203T194425Z
LAST-MODIFIED:20220203T194604Z
UID:385-1646006400-1646092799@ohf.org
SUMMARY:World Rare Disease Day
DESCRIPTION:This February 28 is Rare Disease Day. With so many things going on in the world around us\, it’s very easy to put off important things like health…
URL:https://ohf.org/event/world-rare-disease-day/
LOCATION:TN
CATEGORIES:Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220226T120000
DTEND;TZID=America/New_York:20220226T130000
DTSTAMP:20260425T233207
CREATED:20220208T193637Z
LAST-MODIFIED:20220223T193821Z
UID:482-1645876800-1645880400@ohf.org
SUMMARY:Emotional Wellbeing
DESCRIPTION:Living with a chronic condition places a daily emotional strain on both patients and caregivers\, not to mention the newly added stress of a pandemic. Join us as we step throughs ways to recognize the signs and symptoms and learn ways to find balance in managing emotional health and wellness. \nClick to Register \nSpeakers: \nKristi Ouimet\nOHF Patient Advisory Board Member \nMaya Doyle\, MSW\, PhD\, LCSW-R\nAssociate Professor\nSchool of Health Sciences/Department of Social Work\nQuinnipiac University\, Hamden CT
URL:https://ohf.org/event/emotional-wellbeing/
LOCATION:TN
CATEGORIES:Virtual
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