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X-WR-CALDESC:Events for - Rare Action Network®
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DTSTART;TZID=America/New_York:20261016T120000
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UID:10000068-1792152000-1792155600@rareaction.org
SUMMARY:Becoming Your Own Best Advocate: Practical Skills for Navigating the Rare and Undiagnosed Journey
DESCRIPTION:Navigating a rare or undiagnosed condition can feel overwhelming\, from preparing for medical appointments and communicating with providers to finding reliable information\, resources\, and support. Join us for a practical conversation designed to help patients and families feel more confident\, informed\, and prepared throughout their journey. \nHear from Christine McGarvey\, an undiagnosed patient and NORD’s Rare Action Network Pennsylvania State Ambassador\, and Sarah Marshall\, Community Program Manager and Patient Navigator at the Undiagnosed Diseases Network Foundation. Drawing on both lived and professional experience\, they will share practical strategies for self-advocacy\, navigating the healthcare system\, communicating with providers\, and finding resources and support.
URL:https://rareaction.org/event/becoming-your-own-best-advocate-practical-skills-for-navigating-the-rare-and-undiagnosed-journey/
LOCATION:pensylvania\, Pennsylvania\, 19104
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DTSTART;TZID=UTC:20261021T120000
DTEND;TZID=UTC:20261021T130000
DTSTAMP:20261012T230145
CREATED:20251209T234451Z
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SUMMARY:Georgia Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:Advisory Council Meetings \nThe Georgia RDAC meets virtually\, and you can find their meeting times linked below. \nMeetings
URL:https://rareaction.org/event/georgia-rare-disease-advisory-council-rdac-meeting-times/
LOCATION:NY
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DTSTART;TZID=America/New_York:20261022T130000
DTEND;TZID=America/New_York:20261022T140000
DTSTAMP:20261012T230145
CREATED:20260902T204821Z
LAST-MODIFIED:20260903T170013Z
UID:10000067-1792674000-1792677600@rareaction.org
SUMMARY:Webinar: Make an Impact with Your State’s Rare Disease Advisory Council
DESCRIPTION:Rare Disease Advisory Councils (RDACs) give people impacted by rare diseases a meaningful voice in state government\, and an opportunity to help shape policies and programs impacting the rare disease community. During this webinar\, we’ll teach you how RDACs operate\, and the different ways that advocates can advance and strengthen the work of a council. \nRegister 
URL:https://rareaction.org/event/make-an-impact-with-your-states-rare-disease-advisory-council/
LOCATION:NY
ATTACH;FMTTYPE=image/png:https://rareaction.org/wp-content/uploads/2026/09/Oct-2026-RAN-Webinar.png
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DTSTART;TZID=UTC:20261023T150000
DTEND;TZID=UTC:20261023T170000
DTSTAMP:20261012T230145
CREATED:20251209T235413Z
LAST-MODIFIED:20260914T210035Z
UID:10000012-1792767600-1792774800@rareaction.org
SUMMARY:Indiana Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:Advisory Council Meetings \nThe Indiana RDAC hosts virtual meetings\, and additional meeting information can be found below. \nMeetings
URL:https://rareaction.org/event/indiana-rare-disease-advisory-council-rdac-meeting-times/
LOCATION:NY
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BEGIN:VEVENT
DTSTART;TZID=UTC:20261029T160000
DTEND;TZID=UTC:20261029T170000
DTSTAMP:20261012T230145
CREATED:20260313T221848Z
LAST-MODIFIED:20261007T171957Z
UID:10000038-1793289600-1793293200@rareaction.org
SUMMARY:NORD Volunteer Information Session
DESCRIPTION:In this session\, NORD staff will provide an overview of NORD’s volunteer programming. 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 space for you to ask questions and determine the next steps for your volunteer journey. \nRegister Here
URL:https://rareaction.org/event/nord-volunteer-meeting/
LOCATION:Zoom Meeting\, Online
ATTACH;FMTTYPE=image/png:https://rareaction.org/wp-content/uploads/2026/03/Volunteer-Meeting-Social-Media-Graphic.png
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