Vermont Establishes Rare Disease Advisory Council, Joining 33 Other States

Event summary

  • Vermont Governor Phil Scott signed House Bill 46 into law on May 20, 2026, establishing a Rare Disease Advisory Council (RDAC).
  • Vermont becomes the 34th state with an RDAC, covering 78% of Americans.
  • The council includes a seat for an older Vermonter with a rare disease and a geneticist or genetic counselor.
  • The RDAC is empowered to develop policy recommendations for newborn screening guidance.

The big picture

The establishment of Vermont's RDAC reflects a broader trend of states taking proactive steps to address rare disease policy gaps, particularly in the absence of federal guidance. With only 5% of rare diseases having FDA-approved treatments, state-level councils are becoming crucial for advocating for patient needs and shaping healthcare policies. The inclusion of a geneticist or genetic counselor underscores the growing importance of cell and gene therapies in treating rare diseases.

What we're watching

Policy Influence
How the RDAC's recommendations will shape Vermont's newborn screening programs and rare disease policies.
Advocacy Impact
Whether the RDAC can sustain momentum and drive meaningful improvements for rare disease patients in Vermont.
National Trend
The pace at which other states adopt RDACs, given the growing number of states with such councils.