Our Priorities

Advocating for the Scleroderma Community in 2026

The National Scleroderma Foundation actively monitors activity in Washington, D.C., and works throughout the year to advocate, spread awareness, and address key response opportunities for our constituent base. Our current priorities are to: 

• Stay current and engaged on relevant legislative and public policy issues by monitoring media outlets, participating in coalition advocacy activities, and attending events on Capitol Hill. 
• Ensure Scleroderma continues to be included in the Peer Reviewed Medical Research Program (PRMRP) for FY27. 
• Expand the scleroderma research portfolio at the National Institutes of Health (NIH) and increase educational and awareness opportunities at the Centers for Disease Control and Prevention through growth in FY27 appropriations and demonstrated congressional interest in this area. 
• Cultivate a national network of grassroots advocates capable of effectively engaging their elected officials to advance a Federal legislative and public policy agenda. 
• Lead efforts to improve patient access to quality, affordable healthcare, and innovative treatments through providing input, and activating grassroots advocates on critical issues such as newly introduced or reintroduced legislation like the Safe Step Act, Help Copays Act, Clinical Trials Modernization Act, and the PBM Reform Act. And encourage participation with similar access bills as they arise and relate to scleroderma.    
• Ensure we identify the impact of changes for people living with scleroderma in the activities we monitor, and communicate it effectively to the scleroderma community.