Rare Disease Day 2025

A day, actually an entire week dedicated to raising awareness around rare disease on the Hill. We joined approximately 1000 advocates from across 50 states who descended upon Congress and the Senate making our case for the following:

• Bringing public and congressional awareness to the unique needs of rare diseases
• Addressing the challenges due to the few affected within each disease and delays in getting diagnosis
• Extending the Priority Review Voucher (PRV) and Accelerated Access Care Act
• Addressing the lack of specialty care, the fact patients have to travel outside of state, many of whom depend on Medicaid which won't allow coverage across state lines
• Delays in treatment and loss of life as a result