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PRODID:-//- Rare Action Network® - ECPv6.15.17.1//NONSGML v1.0//EN
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X-ORIGINAL-URL:https://rareaction.org
X-WR-CALDESC:Events for - Rare Action Network®
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261016T120000
DTEND;TZID=America/New_York:20261016T130000
DTSTAMP:20261011T192612
CREATED:20260930T205922Z
LAST-MODIFIED:20260930T205922Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20261021T120000
DTEND;TZID=UTC:20261021T130000
DTSTAMP:20261011T192612
CREATED:20251209T234451Z
LAST-MODIFIED:20261007T171915Z
UID:10000011-1792584000-1792587600@rareaction.org
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261022T130000
DTEND;TZID=America/New_York:20261022T140000
DTSTAMP:20261011T192612
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20261023T150000
DTEND;TZID=UTC:20261023T170000
DTSTAMP:20261011T192612
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20261029T160000
DTEND;TZID=UTC:20261029T170000
DTSTAMP:20261011T192612
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
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261101
DTEND;VALUE=DATE:20261102
DTSTAMP:20261011T192612
CREATED:20261001T175507Z
LAST-MODIFIED:20261001T175611Z
UID:10000069-1793491200-1793577599@rareaction.org
SUMMARY:Join NORD’s Running for Rare Cheer Squad for the 2026 TCS NYC Marathon
DESCRIPTION:Make a difference and join NORD’s Running for Rare Cheer Squad at the 2026 TCS New York City Marathon! \nJoin NORD’s Running for Rare Cheer Squad and help bring energy\, encouragement\, and support to runners along the course. Your presence will help motivate NORD’s team and show the rare disease community that they are surrounded by a strong and supportive community. \nWhether you’re attending with family\, friends\, coworkers\, or a group\, this is a great opportunity to come together\, cheer on the team\, and make a difference. \nSign up today to join NORD’s Running for Rare Cheer Squad!
URL:https://rareaction.org/event/join-nords-running-for-rare-cheer-squad-for-the-2026-tcs-nyc-marathon/
LOCATION:New York\, New York\, NY\, 00501\, United States
ATTACH;FMTTYPE=image/jpeg:https://rareaction.org/wp-content/uploads/2026/10/image-1-scaled.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20261109T090000
DTEND;TZID=UTC:20261109T110000
DTSTAMP:20261011T192612
CREATED:20251209T214039Z
LAST-MODIFIED:20261007T173516Z
UID:10000007-1794214800-1794222000@rareaction.org
SUMMARY:Colorado Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:You can find the Colorado RDAC meeting times linked below. \nMeetings
URL:https://rareaction.org/event/colorado-rdac-meeting-times/
LOCATION:NY
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20261110T160000
DTEND;TZID=UTC:20261110T170000
DTSTAMP:20261011T192612
CREATED:20251210T001051Z
LAST-MODIFIED:20261007T173803Z
UID:10000015-1794326400-1794330000@rareaction.org
SUMMARY:Maryland Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:Advisory Council Meetings \nThe Maryland Rare Disease Advisory Council meets monthly on the second Tuesday of the month from 4-5PM. You can find additional meeting time information linked below. \nMeetings
URL:https://rareaction.org/event/maryland-rare-disease-advisory-council-rdac-meeting-times/
LOCATION:NY
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20261111T130000
DTEND;TZID=UTC:20261111T140000
DTSTAMP:20261011T192612
CREATED:20251209T234924Z
LAST-MODIFIED:20261007T174215Z
UID:10000013-1794402000-1794405600@rareaction.org
SUMMARY:Illinois Rare Disease Commission Meeting
DESCRIPTION:Commission Meetings \nThe Illinois Rare Disease Commission meets monthly\, and you can find additional meeting information below. \nMeetings
URL:https://rareaction.org/event/illinois-rare-disease-commission-meeting-times/
LOCATION:NY
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20261113T090000
DTEND;TZID=UTC:20261113T100000
DTSTAMP:20261011T192612
CREATED:20251210T011133Z
LAST-MODIFIED:20260914T210503Z
UID:10000023-1794560400-1794564000@rareaction.org
SUMMARY:South Carolina Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:Advisory Council Meetings \nYou can find the South Carolina RDAC meeting times linked below. Contact SCRDAC@musc.edu for more info. \nMeetings
URL:https://rareaction.org/event/south-carolina-rare-disease-advisory-council-rdac-meeting-times/
LOCATION:NY
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20261117T100000
DTEND;TZID=UTC:20261117T120000
DTSTAMP:20261011T192612
CREATED:20251210T013000Z
LAST-MODIFIED:20260812T200144Z
UID:10000025-1794909600-1794916800@rareaction.org
SUMMARY:Virginia Rare Disease Council Meeting
DESCRIPTION:Advisory Council Meetings \nThe Virginia Rare Disease Council meets quarterly. \nYou can search for Virginia Rare Disease Council meetings on the Virginia Regulatory Town Hall website. To do so\, simply click “Regulatory Board” and select “State Board of Health”. Then click “Scheduled For” and select “All Past and Future”. Finally\, under “Meeting Title Partial Match” type “Rare Disease” in the search box to populate all relevant meetings. \nMeetings \n 
URL:https://rareaction.org/event/virginia-rare-disease-council-meeting-times/
LOCATION:NY
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20261119T090000
DTEND;TZID=UTC:20261119T110000
DTSTAMP:20261011T192612
CREATED:20251210T001351Z
LAST-MODIFIED:20260915T130131Z
UID:10000016-1795078800-1795086000@rareaction.org
SUMMARY:Massachusetts Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:Advisory Council Meetings \nThe Massachusetts RDAC meets virtually\, and you can find additional meeting information linked below. \nMeetings
URL:https://rareaction.org/event/massachusetts-rare-disease-advisory-council-rdac-meeting-times/
LOCATION:NY
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20261202T080000
DTEND;TZID=UTC:20261202T093000
DTSTAMP:20261011T192612
CREATED:20251210T011448Z
LAST-MODIFIED:20261007T164600Z
UID:10000024-1796198400-1796203800@rareaction.org
SUMMARY:Tennessee Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:The Tennessee RDAC meetings are scheduled on the fourth Wednesday of every other month from 8:00 am to 9:30 am CST. If you are interested in joining the meeting\, please email info@tnrdac.org for instructions on how to attend and a link to the virtual meeting. \nMeetings
URL:https://rareaction.org/event/tennessee-rare-disease-advisory-council-rdac-meeting-times/
LOCATION:NY
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20261204T093000
DTEND;TZID=UTC:20261204T103000
DTSTAMP:20261011T192612
CREATED:20251210T004446Z
LAST-MODIFIED:20261007T172706Z
UID:10000037-1796376600-1796380200@rareaction.org
SUMMARY:Nevada Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:The Nevada RDAC meets on the First Friday of the month on even numbered months at 9:30 AM PST. You can find the Nevada RDAC meeting times linked below. Please click on the Meeting Information for the current year to get further details. \nMeetings \n 
URL:https://rareaction.org/event/nevada-rare-disease-advisory-council-rdac-meeting-times/
LOCATION:NY
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20261208T110000
DTEND;TZID=UTC:20261208T120000
DTSTAMP:20261011T192612
CREATED:20251209T220154Z
LAST-MODIFIED:20260914T211128Z
UID:10000009-1796727600-1796731200@rareaction.org
SUMMARY:Delaware Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:Advisory Council Meetings \nThe Delaware Rare Disease Advisory Council meets online\, and those meetings are open to the public. If you’d like to attend\, please reference the Public Meeting Calendar for a schedule of upcoming meetings. \nPublic Meeting Calendar \n 
URL:https://rareaction.org/event/delaware-rare-disease-advisory-council-rdac-meeting-times/
LOCATION:NY
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20270113T103000
DTEND;TZID=UTC:20270113T140000
DTSTAMP:20261011T192612
CREATED:20251210T003910Z
LAST-MODIFIED:20261007T173344Z
UID:10000020-1799836200-1799848800@rareaction.org
SUMMARY:Missouri Advisory Council on Rare Diseases and Personalized Medicine Meeting
DESCRIPTION:Advisory Council Meetings \nThe Missouri RDAC meets virtually\, and you can find additional meeting information below. \nMeetings
URL:https://rareaction.org/event/missouri-advisory-council-on-rare-diseases-and-personalized-medicine-rdac-meeting-times/
LOCATION:NY
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