TMA Board of Directors Chair Rich DeAugustinis is leading our delegation of myositis advocates at EveryLife Foundation’s Rare Disease Week, February 24-26, 2026 in Washington, DC. Rare Disease Week brings together rare disease advocates from across the country to make their voices heard with their members of Congress. Myositis advocates are learning about policy proposals affecting the rare disease community, and spreading out on Capitol Hill to advocate directly for policy change with their legislators.
Rare events are also an opportunity to reconnect with allies and celebrate our successes! Special congratulations to 2025 Rare Artist Awardee Waiyee Hu, recognized during Rare Disease Week for her piece “Staying Afloat with a Rare Disease.” Waiyee lives with antisynthetase syndrome and shares that “To me, advocacy means turning personal struggle into shared purpose… Staying afloat is an act of courage and advocacy.“
Three recent wins in the Labor, Health and Human Services, and Related Agencies Appropriations bill passed by Congress on February 3, 2026 are also successes for our myositis community.
- TMA is proud to have contributed to robust advocacy from the patient and scientific communities in the most recent budget appropriations cycle, resulting in the NIH receiving $48.7 billion for FY26, an increase of $415 million for federal investment in research. Importantly for our myositis community, the National Center for Advancing Translational Sciences (NCATS), the NIH’s home for rare disease research, will receive a $10 million increase dedicated to rare disease research.
- The FY26 appropriations legislation also included passage of the Joe Fiandra Access to Home Infusion Act. Through this element of the bill, coverage for home infusion services for rare disease patients with Medicare will improve, enabling more patients to receive medically necessary infused medications at home with appropriate support. TMA supports all actions that improve access to treatments that benefit myositis patients, including infusion therapy like intravenous immunoglobulin (IVIg).
- TMA applauds the renewal of the Rare Pediatric Disease Priority Review Voucher (PRV) Program, especially on behalf of our partner Cure JM Foundation and all families affected by juvenile myositis. This important FDA program incentivizes pharmaceutical companies to develop treatments for rare pediatric diseases, and Congress approved a five-year reauthorization. Priority review means a treatment is generally reviewed by the FDA within six months rather than the standard ten-month period.
Stay tuned for future successes, as TMA continues to stand up for individuals affected by all forms of myositis. Ready to get involved? Organize a Myositis Awareness Month proclamation, schedule a meeting in your Member of Congress’ district office, and get to know your elected officials.