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PRODID:-//- Rare Action Network® - ECPv6.15.17.1//NONSGML v1.0//EN
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X-WR-CALNAME:- Rare Action Network®
X-ORIGINAL-URL:https://rareaction.org
X-WR-CALDESC:Events for - Rare Action Network®
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DTSTART:20250101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260508T100000
DTEND;TZID=UTC:20260508T140000
DTSTAMP:20260531T011152
CREATED:20260316T202339Z
LAST-MODIFIED:20260325T014131Z
UID:10000049-1778234400-1778248800@rareaction.org
SUMMARY: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://rareaction.org/event/make-connections-build-community-at-living-rare-living-stronger-arizona/
LOCATION:Grand Canyon University\, 2600 W. Camelback Road\, Phoenix\, AZ\, 85017\, United States
ATTACH;FMTTYPE=image/png:https://rareaction.org/wp-content/uploads/2026/03/Screenshot-2026-03-12-111954.png
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260507T180000
DTEND;TZID=UTC:20260507T200000
DTSTAMP:20260531T011152
CREATED:20260429T035505Z
LAST-MODIFIED:20260429T040212Z
UID:10000056-1778176800-1778184000@rareaction.org
SUMMARY:Rare Disease Community Meet Up
DESCRIPTION:Stop by Greenwood Brewing on Thursday\, May 7 between 6pm to 8pm for a rare disease community meet up! This is a wonderful chance to connect with one another over craft beer and finger foods in a relaxed setting. \nGreenwood Brewing will feature a special Zebra Hop brew for the meet up. Zebra Hop was created by Jonathan Kowalske of Component Brewing\, whose son\, Mac\, was diagnosed with Malan Syndrome right after they opened their brewery. Greenwood Brewing is generously donating a portion of proceeds from the event to benefit Eric Haapaoja’s Running for Rare fundraiser for NORD! Eric lives in Arizona and is running the Cocodona 250 with a charity bib to support NORD (yes\, you read that right\, he is running 250 miles from Black Canyon City to Flagstaff and raising money to fuel NORD’s mission). Eric’s family is personally impacted by rare disease\, and he is taking on the brutal Cocodona 250 to give back and help other families impacted by rare diseases. \nLet us know you are coming: https://www.surveymonkey.com/r/FTZJZ26
URL:https://rareaction.org/event/rare-disease-community-meet-up/
LOCATION:Greenwood Brewing\, 922 N 5th St\, Phoenix\, AZ\, 85004\, United States
ATTACH;FMTTYPE=image/png:https://rareaction.org/wp-content/uploads/2026/04/Benefiting-the-National-Organization-for-Rare-Disorders-NORD®.png
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260423T160000
DTEND;TZID=UTC:20260423T170000
DTSTAMP:20260531T011152
CREATED:20260313T181848Z
LAST-MODIFIED:20260325T014648Z
UID:10000039-1776960000-1776963600@rareaction.org
SUMMARY:NORD Volunteer Meeting
DESCRIPTION:Are you interested in volunteering with NORD? Join us for this virtual meeting to learn about current volunteer and advocacy opportunities. We host this meeting on the last Thursday of every month at 4pm ET. \nRegister Here
URL:https://rareaction.org/event/nord-volunteer-meeting/2026-04-23/
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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BEGIN:VEVENT
DTSTART;TZID=UTC:20260408T080000
DTEND;TZID=UTC:20260408T100000
DTSTAMP:20260531T011152
CREATED:20260318T192313Z
LAST-MODIFIED:20260331T205448Z
UID:10000054-1775635200-1775642400@rareaction.org
SUMMARY:Vermont Advocacy Day
DESCRIPTION:Join NORD’s Vermont Rare Action Network (RAN) for an advocacy event in Montpelier at the State House on Wednesday\, April 8\, 2026. This is your chance to meet  face-to-face with your legislators and advocate for H.46 – the bill to create a Rare Disease Advisory Council (RDAC) in Vermont. During this event\, we will have a table display in the café\, and we’ll be providing information to lawmakers on rare diseases and our RDAC bill. Vermont advocates are invited to join us to help spread awareness! \nEvent details:  \nDate: Wednesday\, April 8\, 2026\nTime: 8:00 a.m. to 10:00 a.m.\nLocation: Vermont State House Cafeteria\, 115 State St.\, Montpelier\, VT 05602 \nRegister Here
URL:https://rareaction.org/event/vermont-advocacy-day-2/
LOCATION:Vermont State House\, 115 State Street\, Montpelier\, VT\, 05602\, United States
ATTACH;FMTTYPE=image/jpeg:https://rareaction.org/wp-content/uploads/2026/03/VT.jpg
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260326T160000
DTEND;TZID=UTC:20260326T170000
DTSTAMP:20260531T011152
CREATED:20260313T181848Z
LAST-MODIFIED:20260325T014648Z
UID:10000038-1774540800-1774544400@rareaction.org
SUMMARY:NORD Volunteer Meeting
DESCRIPTION:Are you interested in volunteering with NORD? Join us for this virtual meeting to learn about current volunteer and advocacy opportunities. We host this meeting on the last Thursday of every month at 4pm ET. \nRegister Here
URL:https://rareaction.org/event/nord-volunteer-meeting/2026-03-26/
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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BEGIN:VEVENT
DTSTART;TZID=UTC:20260323T183000
DTEND;TZID=UTC:20260323T193000
DTSTAMP:20260531T011152
CREATED:20260316T203648Z
LAST-MODIFIED:20260316T203831Z
UID:10000051-1774290600-1774294200@rareaction.org
SUMMARY:New York RDAC Coalition Meeting
DESCRIPTION:During this session\, NORD staff will present: \n\nLegislative Updates: A deep dive into S1287-B/A1296-B\, legislation that would codify a Rare Disease Advisory Council (RDAC) into law in New York.\nAdvocacy Resources: Key details regarding our latest Action Alerts and upcoming webinars.\nStrategic Next Steps: Clear\, actionable items for grassroots advocates to move the needle.\n\nRegister Here
URL:https://rareaction.org/event/new-york-rdac-coalition-meeting/
LOCATION:AZ
ATTACH;FMTTYPE=image/png:https://rareaction.org/wp-content/uploads/2026/03/RDAC-Coalition-Meeting-Graphic-1.png
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260115T110000
DTEND;TZID=UTC:20260115T120000
DTSTAMP:20260531T011152
CREATED:20251209T171321Z
LAST-MODIFIED:20260311T182658Z
UID:10000010-1768474800-1768478400@rareaction.org
SUMMARY:Florida Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:Advisory Council Meetings \nThe Florida RDAC meets virtually\, and you can find the meeting times linked below. \nMeetings
URL:https://rareaction.org/event/florida-rare-disease-advisory-council-rdac-meeting-times/
LOCATION:AZ
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