rideATAXIA Hometown offers teammates the opportunity to ride individually or host local events for their community as part of the rideATAXIA Program Series. rideATAXIA Hometown Boston is proud to be one of the 2024 events! We invite you to join our local Boston committee for a family-friendly ride along the original battlefields where the Revolutionary …
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The 2025 TSSUS National Turner Syndrome Conference will be held in Portland, Oregon on July 18-19, 2025. This annual event is a program of the Turner Syndrome Society of the United States and is in it's 34th year, The TSSUS conference brings together individuals with Turner syndrome, their families, and TS experts in a welcoming …
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As you may know, this year’s National Scleroderma Conference will be held in St. Louis, Missouri, from July 18-20, 2025. This year’s conference, with nearly 50 sessions, workshops, and networking opportunities will attract 500+people to our live, in-person event, including those living with scleroderma, caregivers, family members, physicians, and research scientists. Conference information, including …
AAMDSIF hosts Patient and Family Conferences around the United States each year. Conferences are free to attend and include presentations by the world's leading medical experts in rare blood cancers and bone marrow failure diseases. It is also an incredible and important opportunity for patients and caregivers to connect with one another in person and share support, …
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Cure LBSL will host the LBSL externally-led Patient-Focused Drug Development meeting on Aug. 1 at the National Building Museum in Washington from 10 a.m. to 3 p.m. This hybrid event is open to everyone and will elevate the voices and perspectives of those living with LBSL. Cure LBSL also welcomes LBSL patients from around the …
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🌟 2025 LFSA Youth & Young Adult Workshop Dates: August 15–17, 2025Location: Boston, MAEligibility: Ages 13–25 with Li-Fraumeni Syndrome (LFS)Registration: Interest Form The LFSA Youth & Young Adult Workshop is a transformative event designed to empower young individuals living with Li-Fraumeni Syndrome. This workshop offers a unique opportunity to connect with peers, engage with experts, …
The 2025 CMTA Patient & Research Summit will be held on Friday, September 5th – Sunday, September 7th at the Embassy Suites at Indianapolis Airport in Plainfield, Indiana: https://summit.cmtausa.org The CMTA Summit offers life-improving presentations on living well with CMT and will provide a comprehensive update on CMTA’s Strategy To Accelerate Research (STAR) programs and …
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🔬 DTRF International Research Workshop Date: Friday, September 12, 2025Location: Northwestern Medicine: Prentice Women’s Hospital, Chicago, ILDetails: Designed for researchers and medical professionals, this workshop presents the latest information on desmoid treatments and research. It serves as a forum to share findings, develop collaborations, and identify research priorities. In-person and virtual attendance options are available.🔗 …
Date: Saturday, September 13, 2025Location: Northwestern Medicine: Prentice Women’s Hospital, Chicago, ILDetails: Join us for the cornerstone of the Together We Will Weekend. This meeting features educational presentations by clinicians and researchers, a talk by a desmoid patient, and ample opportunities for networking. Content is tailored for patients, caregivers, and physicians. The event will be …
In-person in Toronto, Canada, with virtual attendance options Join us for the 2025 International Scientific Symposium, taking place from September 17-21, 2025 in Toronto, Canada—a hybrid event designed specifically for healthcare professionals. This symposium will bring together the world’s leading researchers, clinicians, and experts in Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) to share groundbreaking discoveries, foster collaboration, …
41ST ANNUAL MEETING OF THE HISTIOCYTE SOCIETY The 41st Annual Meeting of the Histiocyte Society will take place September 28-30, 2025 in Seattle, WA USA and online with Board and Committee meetings taking place on September 27. Registration is now open! Kim Nichols, Histiocyte Society President, welcomes you to the 41st Annual Meeting of the …
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Rare Cancer Day: September 30 Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer Coalition® every year since 2017, Rare Cancer Day is observed on September 30 to highlight the challenges patients face and to unify individuals living …