02/26/2025
In honor of Rare Disease Week on Capitol Hill 2025, the rare disease community—patients, caregivers, clinicians, researchers, and advocates—is urging Congress to support continued leadership, funding for federal biomedical research, and public health agency resources. The petition, sent to Congress on Rare Disease Day (February 28), represents over 30 million Americans living with one or more of the 10,000 chronic rare diseases, most of which lack FDA-approved treatments.
The community emphasizes the critical role of federal agencies like the NIH, FDA, and CDC in enabling timely diagnoses, supporting insurance coverage for complex medical needs, advancing research, and fostering treatment development. Recent executive actions and the removal of key experts from these agencies threaten progress, economic stability, and patient care. The petition calls for steady, robust federal support to protect vital programs that profoundly impact millions of children and families affected by rare diseases.
