BEGIN:VCALENDAR
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PRODID:-//- Rare Action Network® - ECPv6.15.17.1//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:- Rare Action Network®
X-ORIGINAL-URL:https://rareaction.org
X-WR-CALDESC:Events for - Rare Action Network®
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:UTC
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20250101T000000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=UTC:20261022T160000
DTEND;TZID=UTC:20261022T170000
DTSTAMP:20260610T092948
CREATED:20260313T181848Z
LAST-MODIFIED:20260325T014648Z
UID:10000045-1792684800-1792688400@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/2026-10-22/
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;TZID=UTC:20260924T160000
DTEND;TZID=UTC:20260924T170000
DTSTAMP:20260610T092948
CREATED:20260313T181848Z
LAST-MODIFIED:20260325T014648Z
UID:10000044-1790265600-1790269200@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/2026-09-24/
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;TZID=UTC:20260915T110000
DTEND;TZID=UTC:20260915T120000
DTSTAMP:20260610T092948
CREATED:20251209T170154Z
LAST-MODIFIED:20260505T173554Z
UID:10000009-1789470000-1789473600@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:CA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260827T160000
DTEND;TZID=UTC:20260827T170000
DTSTAMP:20260610T092948
CREATED:20260313T181848Z
LAST-MODIFIED:20260325T014648Z
UID:10000043-1787846400-1787850000@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/2026-08-27/
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;TZID=UTC:20260807T093000
DTEND;TZID=UTC:20260807T103000
DTSTAMP:20260610T092948
CREATED:20251209T194446Z
LAST-MODIFIED:20260609T145003Z
UID:10000037-1786095000-1786098600@rareaction.org
SUMMARY:Nevada Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:Advisory Council Meetings \nThe 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:CA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260723T160000
DTEND;TZID=UTC:20260723T170000
DTSTAMP:20260610T092948
CREATED:20260313T181848Z
LAST-MODIFIED:20260325T014648Z
UID:10000042-1784822400-1784826000@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/2026-07-23/
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;TZID=UTC:20260723T090000
DTEND;TZID=UTC:20260723T110000
DTSTAMP:20260610T092948
CREATED:20251209T191351Z
LAST-MODIFIED:20260609T144310Z
UID:10000016-1784797200-1784804400@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:CA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260722T100000
DTEND;TZID=UTC:20260722T120000
DTSTAMP:20260610T092948
CREATED:20251209T192211Z
LAST-MODIFIED:20260505T175419Z
UID:10000017-1784714400-1784721600@rareaction.org
SUMMARY:Michigan Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:Advisory Council Meetings \nThe Michigan Rare Disease Advisory Council meets quarterly and meetings are open to the public. Please email MDHHS-RareDiseases@michigan.gov for more information.  \nYou can find the upcoming meeting times linked below. \nMeetings
URL:https://rareaction.org/event/michigan-rare-disease-advisory-council-rdac-meeting-times/
LOCATION:CA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260719T090000
DTEND;TZID=UTC:20260719T120000
DTSTAMP:20260610T092948
CREATED:20260603T202523Z
LAST-MODIFIED:20260603T202605Z
UID:10000058-1784451600-1784462400@rareaction.org
SUMMARY:Hoops for Hunter Syndrome
DESCRIPTION:Shoot Hoops. Raise Hope. Change Lives. \nJoin Project Alive on July 19 for Hoops for Hunter Syndrome\, a fun-filled basketball event benefiting Project Alive and the Hunter syndrome community! \nDate: July 19\, 2026\nTime: 9:00 AM – 12:00 PM\nLocation: Ranch Sports Facility \nThis special event was inspired by a family’s love for basketball and their determination to create a brighter future for those living with Hunter syndrome. \nWhat you can expect: \n\nBasketball Tournament\nFamily-Friendly Fun\nSupport a Meaningful Cause\nMake a Difference for Rare Disease Families\n\nRegister Here
URL:https://rareaction.org/event/hoops-for-hunter-syndrome/
LOCATION:Ranch Sports Facility\, 16067 Euclid Ave\, Chino\, CA\, 91708\, United States
ATTACH;FMTTYPE=image/png:https://rareaction.org/wp-content/uploads/2026/06/Hoops-for-Hunters-Fundraiser-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260713T090000
DTEND;TZID=UTC:20260713T110000
DTSTAMP:20260610T092948
CREATED:20251209T164039Z
LAST-MODIFIED:20260609T145139Z
UID:10000007-1783933200-1783940400@rareaction.org
SUMMARY:Colorado Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:Advisory Council Meetings \nYou can find the Colorado RDAC meeting times linked below. \nMeetings \nThe Colorado Rare Disease Advisory Council welcomes comments from the general public during each meeting. Any member of the public who would like to offer a comment at a meeting may do so during the Public Comment portion of the agenda. Unless otherwise called upon to testify to the RDAC\, members of the public are requested to limit their comments to the Public Comment portion only. \nHow to Provide Public Comment at an RDAC Meeting \nVerbal Public Comment: To provide verbal comments\, please fill out the Google Form prior to each meeting. Public comments will be limited to 3 minutes per person. \nWritten Public Comment: To provide written comments about general RDAC business or agenda items\, please email co.rarediseaseadvisorycouncil@gmail.com. Written comments will be accepted up to 48 hours prior to each meeting. Comments submitted after the 48-hour deadline will be considered for the following meeting.
URL:https://rareaction.org/event/colorado-rdac-meeting-times/
LOCATION:CA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260710T090000
DTEND;TZID=UTC:20260710T100000
DTSTAMP:20260610T092948
CREATED:20251209T201133Z
LAST-MODIFIED:20260505T181018Z
UID:10000023-1783674000-1783677600@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:CA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260708T103000
DTEND;TZID=UTC:20260708T140000
DTSTAMP:20260610T092948
CREATED:20251209T193910Z
LAST-MODIFIED:20260609T145947Z
UID:10000020-1783506600-1783519200@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 \nRegister for Public Comment: \nAny interested party shall be granted the opportunity for clinically relevant public comment for up to three (3) minutes per medication under review by the RDAC. The responsibility of scheduling the presentation shall rest with the interested party\, and registration must be completed prior to the scheduled meeting. Interested parties representing a manufacturer shall be granted three (3) minutes in the aggregate per medication under review by the RDAC. \nRegister 
URL:https://rareaction.org/event/missouri-advisory-council-on-rare-diseases-and-personalized-medicine-rdac-meeting-times/
LOCATION:CA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260625T160000
DTEND;TZID=UTC:20260625T170000
DTSTAMP:20260610T092948
CREATED:20260313T181848Z
LAST-MODIFIED:20260325T014648Z
UID:10000041-1782403200-1782406800@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/2026-06-25/
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;TZID=UTC:20260617T130000
DTEND;TZID=UTC:20260617T140000
DTSTAMP:20260610T092948
CREATED:20260603T145837Z
LAST-MODIFIED:20260603T145837Z
UID:10000057-1781701200-1781704800@rareaction.org
SUMMARY:Webinar: Effective Lawmaker Engagement for Rare Disease Advocates
DESCRIPTION:Building strong relationships with lawmakers is one of the most effective ways to advance rare disease policy and ensure the needs of our community are heard. The time between legislative sessions can be one of the most valuable opportunities to establish meaningful\, lasting relationships with elected officials and their staff. During this webinar\, we’ll teach you how to build and nourish relationships with your state lawmakers. We’ll also discuss strategies for engaging members of Congress ahead of the 2026 midterm elections when lawmakers are often spending more time in their home districts and seeking opportunities to connect with constituents. \nRegister Here
URL:https://rareaction.org/event/webinar-effective-lawmaker-engagement-for-rare-disease-advocates/
LOCATION:CA
ATTACH;FMTTYPE=image/png:https://rareaction.org/wp-content/uploads/2026/06/6-17-26-RAN-Webinar-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260617T120000
DTEND;TZID=UTC:20260617T130000
DTSTAMP:20260610T092948
CREATED:20251209T184451Z
LAST-MODIFIED:20260609T144012Z
UID:10000011-1781697600-1781701200@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:CA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260610T120000
DTEND;TZID=UTC:20260610T130000
DTSTAMP:20260610T092948
CREATED:20251209T184924Z
LAST-MODIFIED:20260609T143038Z
UID:10000013-1781092800-1781096400@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:CA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260609T160000
DTEND;TZID=UTC:20260609T170000
DTSTAMP:20260610T092948
CREATED:20251209T191051Z
LAST-MODIFIED:20260609T143123Z
UID:10000015-1781020800-1781024400@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:CA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260605T100000
DTEND;TZID=UTC:20260605T110000
DTSTAMP:20260610T092948
CREATED:20251209T195511Z
LAST-MODIFIED:20260609T143437Z
UID:10000022-1780653600-1780657200@rareaction.org
SUMMARY:New Hampshire Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:Advisory Council Meetings \nThe Council holds public meetings on the first Friday of each month from January through June\, from 10:00 a.m. to 11:00 a.m. \nMeetings typically take place at 29 Hazen Drive\, Concord\, New Hampshire; however\, the meeting location is subject to change. \nAn online attendance option is also available and may be accessed using the Microsoft Teams Meeting Link. \nFor information about attending a meeting\, including confirmation the location\, please contract Bureau of Family Health and Nutrition\, 603-271-4517 \nYou can find the published New Hampshire RDAC meeting times linked below. \nMeetings
URL:https://rareaction.org/event/new-hampshire-rare-disease-advisory-council-rdac-meeting-times/
LOCATION:New Hamp Place\, NH\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260604T090000
DTEND;TZID=UTC:20260604T163000
DTSTAMP:20260610T092948
CREATED:20251209T192731Z
LAST-MODIFIED:20260609T150233Z
UID:10000018-1780563600-1780590600@rareaction.org
SUMMARY:Minnesota Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:Advisory Council Meetings \nThe Minnesota RDAC meets virtually\, and you can find additional meeting information linked below. \nMeetings \nHow to Make a Public Comments during Full Council Meetings \nThe Minnesota Rare Disease Advisory Council values feedback from their community. They dedicate a public comment period during each quarterly full council meeting for members of the public who wish to address the council. If you would like to provide comment\, they ask that you contact them prior to the full council meeting date so that they can provide space. If you have a particular topic you would like to comment on please provide that information to them and your contact information at info@mnraredisease.org.\nIn order to ensure that they can accommodate everyone who may wish to speak\, speaking time is limited to 3 minutes per person.
URL:https://rareaction.org/event/minnesota-rare-disease-advisory-council-rdac-meeting-times/
LOCATION:CA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260528T160000
DTEND;TZID=UTC:20260528T170000
DTSTAMP:20260610T092948
CREATED:20260313T181848Z
LAST-MODIFIED:20260325T014648Z
UID:10000040-1779984000-1779987600@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/2026-05-28/
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;TZID=UTC:20260522T150000
DTEND;TZID=UTC:20260522T170000
DTSTAMP:20260610T092948
CREATED:20251209T185413Z
LAST-MODIFIED:20260505T190624Z
UID:10000012-1779462000-1779469200@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:CA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260519T100000
DTEND;TZID=UTC:20260519T133000
DTSTAMP:20260610T092948
CREATED:20251209T203000Z
LAST-MODIFIED:20260505T174131Z
UID:10000025-1779184800-1779197400@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 select “State Board of Health” as the “Regulatory Board” and “All Past and Future” under “Scheduled For”. Finally\, enter “Rare Disease” in the “Meeting Title Partial Match” search box to populate all relevant meetings. \nMeetings \n 
URL:https://rareaction.org/event/virginia-rare-disease-council-meeting-times/
LOCATION:CA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260423T160000
DTEND;TZID=UTC:20260423T170000
DTSTAMP:20260610T092948
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260326T160000
DTEND;TZID=UTC:20260326T170000
DTSTAMP:20260610T092948
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260115T110000
DTEND;TZID=UTC:20260115T120000
DTSTAMP:20260610T092948
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:CA
END:VEVENT
END:VCALENDAR