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X-WR-CALNAME:National Organization for Rare Disorders
X-ORIGINAL-URL:https://rarediseases.org
X-WR-CALDESC:Events for National Organization for Rare Disorders
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DTSTART;VALUE=DATE:20241205
DTEND;VALUE=DATE:20241206
DTSTAMP:20241202T151451
CREATED:20241007T172807Z
LAST-MODIFIED:20241007T172807Z
UID:10000576-1733356800-1733443199@rarediseases.org
SUMMARY:LGS Foundation: A Special Showing of It’s All Your Fault\, Tyler Price!
DESCRIPTION:Join the LGS Community on December 5th before AES for a special showing of It’s All Your Fault\, Tyler Price! – a new musical from Emmy winner Ben Decter (Lucifer) and Tony nominee Kristin Hanggi (Rock of Ages) raising awareness of #LennoxGastautSyndrome and #Epilepsy! \nThe work will get a world premiere at the Hudson Theatre in Hollywood November 7-December 15. Opening night will be November 14th. \nThe musical follows a middle school kid who punches his bully\, Tyler Price\, defending his epileptic sister. His principal demands he explain himself to the entire school\, which\, naturally drives him to stage a musical. \n“When my family was in crisis—my little girl\, diagnosed with Lennox-Gastaut Syndrome\, was having 100 seizures a day and we felt so isolated—I never imagined a musical would grow out of it. Writing these songs helped my family have difficult conversations and come together\,” says Decter in a statement. “It’s All Your Fault\, Tyler Price! is a fun\, irreverent look at a family going through a really hard time—that everyone can relate to.” \n“This musical is a true passion project for us. It’s about dealing with struggles in our families and how challenging it is to be seen by those closest to us\,” adds Hanggi. “Through art\, our characters learn to explore uncomfortable feelings—things that can be difficult to share or admit. We can’t wait for Los Angeles—where I’ve gotten the opportunity to launch other new musicals—to see our show!” \nSponsors and Community Partners for the upcoming production include Epilepsy Foundation\, Epilepsy Foundation Los Angeles\, the Lennox-Gastaut Syndrome (LGS) Foundation\, The Children’s Ranch\, and more. \nLearn more about the amazing cast and show dates at TylerPriceMusical.com.
URL:https://rarediseases.org/event/lgs-foundation-a-special-showing-of-its-all-your-fault-tyler-price/
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20241205
DTEND;VALUE=DATE:20241207
DTSTAMP:20241202T151451
CREATED:20241003T193533Z
LAST-MODIFIED:20241003T193533Z
UID:10000575-1733356800-1733529599@rarediseases.org
SUMMARY:SLC6A1 Connect 2024 International Scientific Symposium and Family Conference
DESCRIPTION:December 5 – 6\, 2024 \n\nOmni Los Angeles Hotel at California Plaza\n251 South Olive Street\nLos Angeles\, California\, USA\n\n“We hope you will join us for SLC6A1 Connect’s 2024 International Scientific Symposium and Family Conference to be held on December 5-6\, 2024 at the Omni Hotel in Los Angeles\, CA\, prior to the American Epilepsy Society Annual Meeting. Our International Scientific Symposium will be a full day of clinical updates\, scientific presentations and protocols\, the latest research\, family testimonials and an engaging panel discussion on clinical trial readiness. \nAs our patient population and community grows\, we are excited to share that this year our Symposium will be a 2-day event to include a 2nd day just for patients\, caregivers and families. Additionally\, two other rare epilepsy patient advocacy groups\, SynGAP Research Fund and Cure GABA-A Variants will be holding separate but simultaneous Symposia at the same location. This collaboration will allow us to offer joint scientific poster sessions\, a peaceful respite room for patients and caregivers\, overlapping content for families and convenient onsite biospecimen collection.  It will truly be the first of its kind event.”
URL:https://rarediseases.org/event/slc6a1-connect-2024-international-scientific-symposium-and-family-conference/
LOCATION:Omni Los Angeles Hotel at California Plaza\, 251 South Olive Street\, Los Angeles\, CA\, United States
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241216T180000
DTEND;TZID=America/New_York:20241216T184500
DTSTAMP:20241202T151451
CREATED:20240917T174826Z
LAST-MODIFIED:20240917T174826Z
UID:10000568-1734372000-1734374700@rarediseases.org
SUMMARY:Vermont Rare Disease Advisory Council Coalition Meeting
DESCRIPTION:EMPOWER CHANGE \nYour Voice Matters in Building a Rare Disease Advisory Council \nJoin the coalition of rare disease patients\, experts\, and advocates like you to push lawmakers to create a Rare Disease Advisory Council (RDAC) in Vermont. \n\nMeet other rare disease community members in your state.\nDiscuss the unique needs and challenges that the rare disease community faces.\nBecome an active participant in rare disease policy advocacy efforts before your state lawmakers.\n\nDiscover Your Role Today!  \nPlease email rdac@rarediseases.org to request the link for the Vermont Rare Disease Advisory Council Coalition meeting.
URL:https://rarediseases.org/event/vermont-rare-disease-advisory-council-coalition-meeting-4/
LOCATION:Zoom
CATEGORIES:Rare Disease Advisory Council
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241231
DTEND;VALUE=DATE:20250101
DTSTAMP:20241202T151451
CREATED:20241018T162453Z
LAST-MODIFIED:20241018T163951Z
UID:10000583-1735603200-1735689599@rarediseases.org
SUMMARY:The RYR-1 Foundation’s 2025 Family Conference is now open! Register by December 31\, 2024
DESCRIPTION:The RYR-1 Foundation is celebrating a decade of supporting individuals and families impacted by RYR-1-Related Diseases (RYR-1-RD). The organization holds International Family Conferences for the RYR-1-RD Community and the fourth Family Conference will be held July 24th – July 27\, 2025\, at the Hyatt Regency Pittsburgh International Airport\, Pittsburgh\, PA\, U.S. More than 550 individuals from 10 countries have attended prior Family Conferences.\nThese Family Conferences are unique opportunities for affected individuals and families to meet\, form friendships\, and develop a true RYR-1-RD Community. \nThe 2025 Family Conference will feature:\n* Educational lectures and interactive panel discussions with professionals and members of the RYR-1-RD Community\n* Enhanced social activities\n* A revamped Kids Club\n* Opportunities to connect and share experiences with others in the RYR-1-RD Community\n* And more! \nRegistration for The RYR-1 Foundation’s 2025 Family Conference is now open! Register by December 31\, 2024\, at 11:59 pm Pacific Standard Time to receive an “early bird” discount. \nhttps://ryr1.org/family-conferences
URL:https://rarediseases.org/event/the-ryr-1-foundations-2025-family-conference-is-now-open-register-by-december-31-2024/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250113T180000
DTEND;TZID=America/New_York:20250113T184500
DTSTAMP:20241202T151451
CREATED:20240917T174951Z
LAST-MODIFIED:20240917T174951Z
UID:10000569-1736791200-1736793900@rarediseases.org
SUMMARY:Vermont Rare Disease Advisory Council Coalition Meeting
DESCRIPTION:EMPOWER CHANGE \nYour Voice Matters in Building a Rare Disease Advisory Council \nJoin the coalition of rare disease patients\, experts\, and advocates like you to push lawmakers to create a Rare Disease Advisory Council (RDAC) in Vermont. \n\nMeet other rare disease community members in your state.\nDiscuss the unique needs and challenges that the rare disease community faces.\nBecome an active participant in rare disease policy advocacy efforts before your state lawmakers.\n\nDiscover Your Role Today!  \nPlease email rdac@rarediseases.org to request the link for the Vermont Rare Disease Advisory Council Coalition meeting.
URL:https://rarediseases.org/event/vermont-rare-disease-advisory-council-coalition-meeting-5/
LOCATION:Zoom
CATEGORIES:Rare Disease Advisory Council
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250421
DTEND;VALUE=DATE:20250422
DTSTAMP:20241202T151451
CREATED:20240320T135252Z
LAST-MODIFIED:20240320T135252Z
UID:10000512-1745193600-1745279999@rarediseases.org
SUMMARY:Boston Marathon (2025)
DESCRIPTION:Learn more at https://runningforrare.org/events/
URL:https://rarediseases.org/event/boston-marathon-2025/
LOCATION:CT\, United States
CATEGORIES:Running for Rare
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