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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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DTSTART:20251102T060000
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DTSTART:20260308T070000
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260903T120000
DTEND;TZID=America/New_York:20260903T130000
DTSTAMP:20260812T190856
CREATED:20260812T172931Z
LAST-MODIFIED:20260812T172931Z
UID:10000065-1788436800-1788440400@rareaction.org
SUMMARY:Webinar: Recognizing Rare Cancer Day Through Action
DESCRIPTION:Rare Cancer Day is an annual celebration devoted to raising awareness about rare cancers and the challenges people living with them face. This year\, Rare Cancer Day is being recognized on September 23. For the rare cancer community\, timely access to innovative diagnostic and comprehensive care can mean the difference between life and death. During this webinar\, we’ll discuss NORD’s state\, federal\, and regulatory efforts impacting the rare cancer community. We’ll also share how you can get involved and make an impact on Rare Cancer Day. \nRegister
URL:http://rareaction.org/event/webinar-recognizing-rare-cancer-day-through-action/
ATTACH;FMTTYPE=image/png:http://rareaction.org/wp-content/uploads/2026/08/Sept-2026-RAN-Webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260828T090000
DTEND;TZID=UTC:20260828T100000
DTSTAMP:20260812T190856
CREATED:20251210T011133Z
LAST-MODIFIED:20260812T194327Z
UID:10000023-1787907600-1787911200@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:20260827T160000
DTEND;TZID=UTC:20260827T170000
DTSTAMP:20260812T190856
CREATED:20260313T221848Z
LAST-MODIFIED:20260812T171538Z
UID:10000038-1787846400-1787850000@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:20260827T150000
DTEND;TZID=UTC:20260827T160000
DTSTAMP:20260812T190856
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:20260819T120000
DTEND;TZID=UTC:20260819T130000
DTSTAMP:20260812T190856
CREATED:20251209T234451Z
LAST-MODIFIED:20260812T194651Z
UID:10000011-1787140800-1787144400@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:20260819T010000
DTEND;TZID=UTC:20260819T140000
DTSTAMP:20260812T190856
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:20260814T150000
DTEND;TZID=UTC:20260814T170000
DTSTAMP:20260812T190856
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:20260812T120000
DTEND;TZID=UTC:20260812T130000
DTSTAMP:20260812T190856
CREATED:20251209T234924Z
LAST-MODIFIED:20260812T193957Z
UID:10000013-1786536000-1786539600@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:20260811T160000
DTEND;TZID=UTC:20260811T170000
DTSTAMP:20260812T190856
CREATED:20251210T001051Z
LAST-MODIFIED:20260812T194610Z
UID:10000015-1786464000-1786467600@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:20260810T120000
DTEND;TZID=UTC:20260810T130000
DTSTAMP:20260812T190856
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=America/New_York:20260730T150000
DTEND;TZID=America/New_York:20260730T160000
DTSTAMP:20260812T190856
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:20260722T130000
DTEND;TZID=UTC:20260722T140000
DTSTAMP:20260812T190856
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:20260719T090000
DTEND;TZID=UTC:20260719T120000
DTSTAMP:20260812T190856
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:20260707T180000
DTEND;TZID=UTC:20260707T190000
DTSTAMP:20260812T190856
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:20260812T190856
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:20260812T190856
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:20260812T190856
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:20260812T190856
CREATED:20251210T011448Z
LAST-MODIFIED:20260812T201037Z
UID:10000024-1774425600-1774431000@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:http://rareaction.org/event/tennessee-rare-disease-advisory-council-rdac-meeting-times/
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