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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:20260707T180000
DTEND;TZID=UTC:20260707T190000
DTSTAMP:20260812T080155
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:20260708T120000
DTEND;TZID=UTC:20260708T130000
DTSTAMP:20260812T080155
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:20260710T090000
DTEND;TZID=UTC:20260710T100000
DTSTAMP:20260812T080155
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:20260714T160000
DTEND;TZID=UTC:20260714T170000
DTSTAMP:20260812T080155
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:20260715T120000
DTEND;TZID=UTC:20260715T130000
DTSTAMP:20260812T080155
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:20260719T090000
DTEND;TZID=UTC:20260719T120000
DTSTAMP:20260812T080155
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:20260722T100000
DTEND;TZID=UTC:20260722T120000
DTSTAMP:20260812T080155
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:20260722T130000
DTEND;TZID=UTC:20260722T140000
DTSTAMP:20260812T080155
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:20260723T090000
DTEND;TZID=UTC:20260723T110000
DTSTAMP:20260812T080155
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=America/New_York:20260730T150000
DTEND;TZID=America/New_York:20260730T160000
DTSTAMP:20260812T080155
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:20260730T160000
DTEND;TZID=UTC:20260730T170000
DTSTAMP:20260812T080155
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=UTC:20260805T100000
DTEND;TZID=UTC:20260805T120000
DTSTAMP:20260812T080155
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:20260807T093000
DTEND;TZID=UTC:20260807T103000
DTSTAMP:20260812T080155
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:20260810T090000
DTEND;TZID=UTC:20260810T110000
DTSTAMP:20260812T080155
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:20260810T120000
DTEND;TZID=UTC:20260810T130000
DTSTAMP:20260812T080155
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:20260814T150000
DTEND;TZID=UTC:20260814T170000
DTSTAMP:20260812T080155
CREATED:20251209T235413Z
LAST-MODIFIED:20260729T235207Z
UID:10000012-1786719600-1786726800@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:http://rareaction.org/event/indiana-rare-disease-advisory-council-rdac-meeting-times/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260819T010000
DTEND;TZID=UTC:20260819T140000
DTSTAMP:20260812T080155
CREATED:20260728T212618Z
LAST-MODIFIED:20260729T235117Z
UID:10000064-1787101200-1787148000@rareaction.org
SUMMARY:Webinar: Understanding Medical Nutrition and Insurance Coverage Challenges
DESCRIPTION:For many rare disease patients\, medical nutrition products are life-sustaining medicine\, yet insurance coverage for medical nutrition is inconsistent and varies widely based on a patient’s diagnosis\, insurance plan type\, and state of residence. During this webinar\, we’ll teach you about the meaning of “medically necessary nutrition products”\, how medical nutrition coverage challenges impact the rare disease community\, and ways you can advocate for improved medical nutrition coverage in your state and at the federal level. \nRegister
URL:http://rareaction.org/event/webinar-understanding-medical-nutrition-and-insurance-coverage-challenges/
ATTACH;FMTTYPE=image/png:http://rareaction.org/wp-content/uploads/2026/07/8-19-26-RAN-Webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260827T150000
DTEND;TZID=UTC:20260827T160000
DTSTAMP:20260812T080155
CREATED:20260709T174832Z
LAST-MODIFIED:20260729T235053Z
UID:10000063-1787842800-1787846400@rareaction.org
SUMMARY:Webinar: Innovative Approaches to Improving Your Rare Disease Care
DESCRIPTION:In an era of scientific and technological advances\, rare disease care is changing every day. Join us for a robust panel discussion diving into different approaches to navigate and improve your rare care throughout each step of your journey. \nRegister
URL:http://rareaction.org/event/living-rare-living-stronger-summer-webinar-series-2/
ATTACH;FMTTYPE=image/png:http://rareaction.org/wp-content/uploads/2026/07/LRLS-Virtual.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260915T110000
DTEND;TZID=UTC:20260915T120000
DTSTAMP:20260812T080155
CREATED:20251209T220154Z
LAST-MODIFIED:20260729T235020Z
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:http://rareaction.org/event/delaware-rare-disease-advisory-council-rdac-meeting-times/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20261008T103000
DTEND;TZID=UTC:20261008T140000
DTSTAMP:20260812T080155
CREATED:20251210T003910Z
LAST-MODIFIED:20260729T234942Z
UID:10000020-1791455400-1791468000@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:http://rareaction.org/event/missouri-advisory-council-on-rare-diseases-and-personalized-medicine-rdac-meeting-times/
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