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DTSTART;VALUE=DATE:20220714
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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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DTSTART;TZID=America/New_York:20220810T180000
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DTSTAMP:20260413T100131
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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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DTSTART;TZID=America/New_York:20221112T110000
DTEND;TZID=America/New_York:20221112T140000
DTSTAMP:20260413T100131
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
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230304
DTSTAMP:20260413T100131
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;VALUE=DATE:20230623
DTEND;VALUE=DATE:20230626
DTSTAMP:20260413T100131
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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DTSTART;TZID=America/New_York:20250627T170000
DTEND;TZID=America/New_York:20250629T200000
DTSTAMP:20260413T100131
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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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