Celebrate Rare Disease Day all month with rare disease events from TMA, FDA, and NIH! Rare Disease Day is a global initiative to raise awareness and generate support for everyone who is on a rare medical journey. To see the list of events, visit our Rare Disease Awareness page: Rare Disease Awareness - The Myositis...
Help Us Raise $5,000 for TMA’s Patient Conference Scholarship Fund Attending MyoCon: TMA's Global Myositis Patient Conference is a life-changing experience for those living with myositis and their families, providing education, support, and a sense of community. This year, for Rare Disease Week, February 23-27, 2026, our goal is to bring together 50 donors and...
The FDA will host “Moving Forward. Looking Ahead. An Event for Patients" for Rare Disease Day. Join this virtual public meeting on Monday, February 23, 2026, in global observance of Rare Disease Week. Learn More. Are you participating in a Rare Disease Day event? Please email [email protected] to let us know where you are participating. Visit TMA's website for more events honoring...
This free multi-day event, hosted by the Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases, brings together rare disease advocates from across the country to make their voices heard with their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate...
On Friday, February 27, 2026, from 9 AM to 5 PM ET, the NIH will host Rare Disease Day 2026, both in-person at the NIH main campus (Natcher Conference Center) and virtually via NIH VideoCast. Be sure to stop by and say hello to the TMA team at our myositis exhibit table at the NIH. For more information...
Rare Disease Journeys Community Survey For Rare Disease Day on February 28th, 2026, TMA wants to hear from you! Share your tips for navigating a rare medical journey in myositis and what you and your family do to overcome isolation, connect with others, and make your rare experience easier. Share your story here. Are you...