The Coalition Calls on Congress to Pass Two Key Bills

Children with Rare Diseases Can't Wait.

We were proud to sign onto this important letter, joining ARM and more than 100 rare disease organizations, healthcare providers, and academic institutions in urging Congress to act before the end of the year. Children living with rare diseases cannot wait for access to the treatments and specialized care they desperately need.

The Coalition for Hemophilia B strongly supports:

• The Give Kids a Chance Act – Reauthorizing the Rare Pediatric Disease Priority Review Voucher program, a proven and zero-cost incentive that accelerates development of therapies for rare pediatric conditions, including cell and gene therapies.

• The Accelerating Kids’ Access to Care Act – Streamlining out-of-state Medicaid provider credentialing so children with complex conditions can reach the specialized care teams they rely on, including access to advanced CGT centers.

For the 30 million Americans living with a rare disease, these bipartisan bills are essential steps toward faster access to life-saving treatments and a stronger pipeline of innovation.

We are grateful to stand with so many partners committed to improving health equity for children and families in the rare disease community.