Community Congress is a policy-focused membership program that brings together patient advocacy organizations, industry, and ecosystem partners to collaborate on federal and state policy priorities.
Working Groups:
- Newborn Screening & Diagnostics – Focused on reducing and eliminating the diagnostic odyssey
- Public Policy – Focused on responding to and shaping legislative policy impacting rare diseases in order to close the innovation gap
- Regulatory – Focused on enhancing regulatory infrastructure and processes, as well as advancing regulatory science for rare disease products
- Access & Value – Focused on ensuring patient access to safe and efficacious, approved treatments at the earliest moment possible
