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X-WR-CALNAME:National Organization for Rare Disorders
X-ORIGINAL-URL:https://rarediseases.org
X-WR-CALDESC:Events for National Organization for Rare Disorders
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DTSTART;TZID=America/New_York:20260508T100000
DTEND;TZID=America/New_York:20260508T140000
DTSTAMP:20260312T162430Z
CREATED:20260312T161536Z
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UID:10001190-1778234400-1778248800@rarediseases.org
SUMMARY:Make Connections & Build Community at Living Rare\, Living Stronger Arizona
DESCRIPTION:The National Organization for Rare Disorders (NORD®) invites you to join us in Phoenix\, Arizona for a day of education and connection. Our Living Rare Forum is designed to help you navigate your life with a rare disease or as a rare caregiver. Each forum features expert speakers\, dynamic educational sessions\, and meaningful community-building opportunities. \nRegister Here \nEvent details: \nDate: Friday\, May 8\, 2026\nTime: 10:00 a.m. to 2:00 p.m.\nLocation: Grand Canyon University\, Education Center Building 71\n2600 W. Camelback Road\nPhoenix\, AZ 85017
URL:https://rarediseases.org/event/make-connections-build-community-at-living-rare-living-stronger-arizona/
CATEGORIES:Advocate,For Patient Organizations,For Patients and Families,NORD Events,Patient Meetings,Rare Action Network Events
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/03/Screenshot-2026-03-12-111954.png
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DTSTART;TZID=America/New_York:20260515T090000
DTEND;TZID=America/New_York:20260515T130000
DTSTAMP:20260312T162850Z
CREATED:20260312T161916Z
LAST-MODIFIED:20260312T162850Z
UID:10001191-1778835600-1778850000@rarediseases.org
SUMMARY:Make Connections & Build Community at Living Rare\, Living Stronger Colorado
DESCRIPTION:The National Organization for Rare Disorders (NORD®) invites you to join us in Denver\, Colorado for a day of education and connection. Our Living Rare Forum is designed to help you navigate your life with a rare disease or as a rare caregiver. Each forum features expert speakers\, dynamic educational sessions\, and meaningful community-building opportunities. \nRegister Here \nEvent details: \nDate: Friday\, May 15\, 2026\nTime: 9:00 a.m. to 1:00 p.m.\nLocation: Auraria Campus\, Tivoli – Turnhalle\n900 Auraria Parkway\, Denver\, CO 80204
URL:https://rarediseases.org/event/make-connections-build-community-at-living-rare-living-stronger-colorado/
CATEGORIES:Advocate,For Clinicians and Researchers,For Patient Organizations,For Patients and Families,NORD Events,Patient Meetings,Rare Action Network Events
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/03/Screenshot-2026-03-12-111954.png
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DTSTART;TZID=America/New_York:20260526T130000
DTEND;TZID=America/New_York:20260526T140000
DTSTAMP:20260519T212128Z
CREATED:20260519T212128Z
LAST-MODIFIED:20260519T212128Z
UID:10001229-1779800400-1779804000@rarediseases.org
SUMMARY:Webinar: Copay Accumulator Programs
DESCRIPTION:Prescription drug out-of-pocket costs are expenses that patients pay for medical care that insurance does not cover\, and are one of the 9 issue areas assessed on NORD’s State Report Card. We assess five key protections that some states enact to limit patient out-of-pocket costs for prescription drugs\, and one of these protections are copay accumulator bans. Join us for a webinar focused on copay accumulator programs on Tuesday\, May 26\, 2026\, from 1pm to 2pm ET. We’ll teach you about copay accumulator programs and discuss how you can get involved in advocating for policies that reduce patient out-of-pocket expenses on prescription drugs to support better access to the therapies rare disease patients need. \nRegister Here
URL:https://rarediseases.org/event/webinar-copay-accumulator-programs/
CATEGORIES:Advocate,For Patients and Families,NORD Events,Rare Action Network Events
ATTACH;FMTTYPE=image/jpeg:https://rarediseases.org/wp-content/uploads/2026/05/Copay-webinar-graphic.jpg
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DTSTART;TZID=America/New_York:20260528T160000
DTEND;TZID=America/New_York:20260528T170000
DTSTAMP:20260325T190143Z
CREATED:20260324T153247Z
LAST-MODIFIED:20260325T190143Z
UID:10001198-1779984000-1779987600@rarediseases.org
SUMMARY:NORD Volunteer Meeting
DESCRIPTION:In this session\, our Community Engagement team will provide a comprehensive\, high-level overview of NORD’s volunteer programming and the strategic initiatives. This is designed to give you a clear understanding of our mission and the various ways you can make an impact. We will conclude with an open-floor discussion\, providing a dedicated space for you to ask questions and collaboratively determine the most meaningful next steps for your unique volunteer journey. \nRegister Here
URL:https://rarediseases.org/event/nord-volunteer-meeting/2026-05-28/
CATEGORIES:Advocate,For Clinicians and Researchers,For Patient Organizations,For Patients and Families,NORD Events,Rare Action Network Events
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/03/Volunteer-Meeting-Social-Media-Graphic.png
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