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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:http://rareaction.org
X-WR-CALDESC:Events for - Rare Action Network®
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260810T120000
DTEND;TZID=UTC:20260810T130000
DTSTAMP:20260812T123113
CREATED:20260630T195527Z
LAST-MODIFIED:20260729T235308Z
UID:10000061-1786363200-1786366800@rareaction.org
SUMMARY:Students for Rare New Chapter Info Session - August
DESCRIPTION:Are you a collegiate student interested in starting a NORD Students for Rare chapter on campus? Come and learn more about the program and next steps during our New Chapter Info Session! Our August session will take place on August 10 at 12:00 p.m. ET. We look forward to seeing you there!\nRegister Here
URL:http://rareaction.org/event/students-for-rare-new-chapter-info-session-august/
ATTACH;FMTTYPE=image/png:http://rareaction.org/wp-content/uploads/2026/06/Students-for-Rare-Info-Session-Social-Graphic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260810T090000
DTEND;TZID=UTC:20260810T110000
DTSTAMP:20260812T123113
CREATED:20251209T214039Z
LAST-MODIFIED:20260806T204722Z
UID:10000007-1786352400-1786359600@rareaction.org
SUMMARY:Colorado Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:You can find the Colorado RDAC meeting times linked below. \nMeetings
URL:http://rareaction.org/event/colorado-rdac-meeting-times/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260807T093000
DTEND;TZID=UTC:20260807T103000
DTSTAMP:20260812T123113
CREATED:20251210T004446Z
LAST-MODIFIED:20260729T235613Z
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:http://rareaction.org/event/nevada-rare-disease-advisory-council-rdac-meeting-times/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260805T100000
DTEND;TZID=UTC:20260805T120000
DTSTAMP:20260812T123113
CREATED:20251210T013000Z
LAST-MODIFIED:20260729T235746Z
UID:10000025-1785924000-1785931200@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:http://rareaction.org/event/virginia-rare-disease-council-meeting-times/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260730T160000
DTEND;TZID=UTC:20260730T170000
DTSTAMP:20260812T123113
CREATED:20260313T221848Z
LAST-MODIFIED:20260730T185941Z
UID:10000038-1785427200-1785430800@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:http://rareaction.org/event/nord-volunteer-meeting/
LOCATION:Zoom Meeting\, Online
ATTACH;FMTTYPE=image/png:http://rareaction.org/wp-content/uploads/2026/03/Volunteer-Meeting-Social-Media-Graphic.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260730T150000
DTEND;TZID=America/New_York:20260730T160000
DTSTAMP:20260812T123113
CREATED:20260709T174508Z
LAST-MODIFIED:20260730T000411Z
UID:10000062-1785423600-1785427200@rareaction.org
SUMMARY:Webinar: Overcoming Insurance Barriers
DESCRIPTION:If you are impacted by a rare disease\, you are likely spending countless hours navigating health insurance. In this session\, we will discuss common insurance barriers faced by patients and caregivers living with a rare disease\, and tips to overcome them. This panel incorporates several unique perspectives for every step in your journey that you won’t want to miss! \nRegister
URL:http://rareaction.org/event/living-rare-living-stronger-summer-webinar-series/
ATTACH;FMTTYPE=image/png:http://rareaction.org/wp-content/uploads/2026/07/LRLS-Virtual.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260723T090000
DTEND;TZID=UTC:20260723T110000
DTSTAMP:20260812T123113
CREATED:20251210T001351Z
LAST-MODIFIED:20260730T000607Z
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:http://rareaction.org/event/massachusetts-rare-disease-advisory-council-rdac-meeting-times/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260722T130000
DTEND;TZID=UTC:20260722T140000
DTSTAMP:20260812T123113
CREATED:20260630T190201Z
LAST-MODIFIED:20260730T000813Z
UID:10000059-1784725200-1784728800@rareaction.org
SUMMARY:Webinar: State Legislative Session Recap
DESCRIPTION:As state legislative sessions wind down\, join NORD’s Rare Action Network (RAN) for an end of session policy & advocacy wrap up. During this webinar\, we’ll discuss bills we tracked across the country\, celebrate our hard-fought advocacy wins\, and identify key opportunities for growth and improvement. We’ll also discuss potential areas of focus as we head towards 2027! \nRegister Here
URL:http://rareaction.org/event/webinar-state-legislative-session-recap/
ATTACH;FMTTYPE=image/png:http://rareaction.org/wp-content/uploads/2026/06/July-RAN-Webinar-State-Legislative-Session-Recap.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260722T100000
DTEND;TZID=UTC:20260722T120000
DTSTAMP:20260812T123113
CREATED:20251210T002211Z
LAST-MODIFIED:20260730T000913Z
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:http://rareaction.org/event/michigan-rare-disease-advisory-council-rdac-meeting-times/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260719T090000
DTEND;TZID=UTC:20260719T120000
DTSTAMP:20260812T123113
CREATED:20260604T002523Z
LAST-MODIFIED:20260730T001035Z
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:http://rareaction.org/event/hoops-for-hunter-syndrome/
LOCATION:Ranch Sports Facility\, 16067 Euclid Ave\, Chino\, CA\, 91708\, United States
ATTACH;FMTTYPE=image/png:http://rareaction.org/wp-content/uploads/2026/06/Hoops-for-Hunters-Fundraiser-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260715T120000
DTEND;TZID=UTC:20260715T130000
DTSTAMP:20260812T123113
CREATED:20251209T234451Z
LAST-MODIFIED:20260730T001158Z
UID:10000011-1784116800-1784120400@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:http://rareaction.org/event/georgia-rare-disease-advisory-council-rdac-meeting-times/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260714T160000
DTEND;TZID=UTC:20260714T170000
DTSTAMP:20260812T123113
CREATED:20251210T001051Z
LAST-MODIFIED:20260730T001343Z
UID:10000015-1784044800-1784048400@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:http://rareaction.org/event/maryland-rare-disease-advisory-council-rdac-meeting-times/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260710T090000
DTEND;TZID=UTC:20260710T100000
DTSTAMP:20260812T123113
CREATED:20251210T011133Z
LAST-MODIFIED:20260730T001446Z
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:http://rareaction.org/event/south-carolina-rare-disease-advisory-council-rdac-meeting-times/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260708T120000
DTEND;TZID=UTC:20260708T130000
DTSTAMP:20260812T123113
CREATED:20251209T234924Z
LAST-MODIFIED:20260730T001648Z
UID:10000013-1783512000-1783515600@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:http://rareaction.org/event/illinois-rare-disease-commission-meeting-times/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260707T180000
DTEND;TZID=UTC:20260707T190000
DTSTAMP:20260812T123113
CREATED:20260630T195409Z
LAST-MODIFIED:20260730T002206Z
UID:10000060-1783447200-1783450800@rareaction.org
SUMMARY:Students for Rare New Chapter Info Session - July
DESCRIPTION:Are you a collegiate student interested in starting a NORD Students for Rare chapter on campus? Come and learn more about the program and next steps during our New Chapter Info Session! Our July session will take place on July 7 at 6:00 p.m. ET. We look forward to seeing you there!\nRegister Here
URL:http://rareaction.org/event/students-for-rare-new-chapter-info-session-july/
ATTACH;FMTTYPE=image/png:http://rareaction.org/wp-content/uploads/2026/06/Students-for-Rare-Info-Session-Social-Graphic.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260617T130000
DTEND;TZID=UTC:20260617T140000
DTSTAMP:20260812T123113
CREATED:20260603T185837Z
LAST-MODIFIED:20260730T002238Z
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:http://rareaction.org/event/webinar-effective-lawmaker-engagement-for-rare-disease-advocates/
ATTACH;FMTTYPE=image/png:http://rareaction.org/wp-content/uploads/2026/06/6-17-26-RAN-Webinar-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260605T100000
DTEND;TZID=UTC:20260605T110000
DTSTAMP:20260812T123113
CREATED:20251210T005511Z
LAST-MODIFIED:20260730T002317Z
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:http://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:20260812T123113
CREATED:20251210T002731Z
LAST-MODIFIED:20260730T002349Z
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:http://rareaction.org/event/minnesota-rare-disease-advisory-council-rdac-meeting-times/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260325T080000
DTEND;TZID=UTC:20260325T093000
DTSTAMP:20260812T123113
CREATED:20251210T011448Z
LAST-MODIFIED:20260730T002421Z
UID:10000024-1774425600-1774431000@rareaction.org
SUMMARY:Tennessee Rare Disease Advisory Council (RDAC) Meeting
DESCRIPTION:Advisory Council Meetings \nThe 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:http://rareaction.org/event/tennessee-rare-disease-advisory-council-rdac-meeting-times/
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