TMA encourages all of our members to participate in rare disease awareness and advocacy. Beyond Myositis Awareness Month and World Myositis Day, there are opportunities for myositis advocates to participate in broader observances.
Rare Disease Day is one of those important awareness opportunities. Rare Disease Day is a global initiative to raise awareness and generate support for everyone who is on a rare medical journey. It takes place on the last day of February, which this year is February 28, 2026.
How do you navigate your rare?
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.
NIH Rare Disease Day 2026
NIH Rare Disease Day 2026 will be held both in-person at the NIH main campus (Natcher Conference Center) and virtually via NIH VideoCast on Friday, February 27, 2026, from 9 a.m. to 5 p.m. EST.
Don’t miss TMA Support Group Leader Lindsay Guentzel, Multimedia Journalist, Storyteller, and Advocate who will share her dermatomyositis journey in the 11:10 a.m. “Rare Story: The Full-Time Job of Living Rare – Advocacy, Resilience and the Fight for Care.” The event agenda will feature panel discussions, rare disease stories, in-person exhibitors and scientific posters, and an art exhibit. The event is free and open to the public.
For more information and to register: Rare Disease Day at NIH | National Center for Advancing Translational Sciences.
FDA Rare Disease Day 2026 Public Meeting
FDA will host Rare Disease Day, a virtual public meeting, on Monday, February 23, 2026, from 9 a.m. to 4 p.m. ET.
Titled “Moving Forward. Looking Ahead. An Event for Patients”, the goal of this year’s Rare Disease Day is to explore ways to engage and collaborate with patients and their communities to support and accelerate the development of medical products for rare diseases. Panels will discuss patient focused FDA initiatives, patient engagement opportunities, addressing challenges and opportunities with AI technology, and utilizing real-world data and real-world evidence at FDA.
For more information and to register: Public Meeting: FDA Rare Disease Day 2026 – 02/23/2026 | FDA
Check Out Even More Events for Rare Disease Month, Week, & Day
Rare Disease Week takes place February 24-26, 2026, hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases). Events in Washington, DC bring together rare disease advocates to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress.
Many Rare Disease Month, Week, and Day events are held across the world. Find an event near you, and learn more about how to Show Your Stripes® for Rare Disease Day® with NORD®.
State Policy and Advocacy for Rare Disease Day hosted by TMA’s WomenWithIBM Affinity Group
February’s WomenWithIBM affinity group meeting will include conversation with Carolyn Sheridan, MPH, and Jake Saltonstall, MPA, from the National Organization of Rare Diseases (NORD) on state policy and the role of state governments in policy making, as well as advocacy and community engagement opportunities for Rare Disease Day. This meeting is free and open to the public. It will take place on February 17, 2026 from 12 p.m. to 1:30 p.m. ET.
Help Us Raise $5,000 for TMA’s MyoCon Scholarship Fund
Attending TMA’s MyoCon 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 raise $5,000 to provide conference scholarships. Your donation, no matter the size, helps bring hope and connection to patients who need it most. Give today and help us reach our goal.
Additional Resources from Rare Disease Month 2025
- TMA’s 2025 We Care for Rare Summit
- TMA’s 2025 Rare Disease Month Empowerment Clinic
- “60 Seconds to Impact: Sharing Your Story with Purpose.”
- Tips for Navigating Rare Myositis Journey
- Rare Disease Day YouTube Playlist