Vermont Takes a Major Step with New Rare Disease Advisory Council Law

On May 20, 2026, Vermont Governor Phil Scott officially signed House Bill 46 into law, marking a significant milestone in the advocacy for rare disease patients. This legislation establishes the Rare Disease Advisory Council (RDAC) in Vermont, giving a formal voice to those affected by rare diseases. Vermont now joins 33 other states, including all New England states, in creating a structured platform to address the needs of individuals and families impacted by rare conditions.

A Historic Initiative

The bill was sponsored by Representatives Mary-Katherine Stone, Anne Donahue, and Daniel Noyes, with strong backing from the National Organization for Rare Disorders (NORD) and numerous patient advocates throughout the state. Pamela K. Gavin, NORD's Chief Executive Officer, expressed her pride in the community's efforts, emphasizing their role in transforming the law into a reality. The RDAC serves as a vital tool for addressing the complex challenges faced by the rare disease community, demonstrating Hartford's commitment to improved patient care.

Unique Features of Vermont's RDAC

What sets Vermont's RDAC apart is its inclusive membership structure. Notably, it reserves a seat for an older patient living with a rare disease, highlighting the diverse impact of these conditions across age groups. Additionally, a geneticist or genetic counselor will also hold a position on the council, recognizing the crucial role of genetic research and therapies in treating rare diseases.

The establishment of this council comes at a critical time as the federal Advisory Committee on Heritable Disorders in Newborns and Children has recently disbanded. This leaves many states, including Vermont, needing to independently navigate newborn screening guidelines. The RDAC will develop policy recommendations to guide the Vermont Department of Health in its screening practices, positioning itself to fill this important gap in healthcare administration.

Voices of Change

Advocates and community members played a significant role in the bill's passage. More than 30 patient organizations supported the effort, including prominent groups like the ALS Association and the Ehlers-Danlos Society. Testimonials from Vermonters living with rare diseases helped to underline the importance of representation in policy discussions. Mary Nadon Scott, a notable advocate and recipient of the NORD Rare Impact Award, expressed her hope that the RDAC will lead to meaningful policy improvements for families facing these challenges in the state.

Similarly, Leslie Kanat, a NORD volunteer whose child has Fragile X Syndrome, praised Vermont's responsive legislators who actively engaged with constituents experiencing rare diseases. With approximately 10% of Vermonters affected by some form of rare disease, the RDAC will ensure these individuals are considered in future policy decisions.

A Growing Movement

The establishment of RDACs has been rapidly increasing across the United States. Only nine states had established councils in 2020, representing 19% of Americans. With Vermont's addition, 34 states now have RDACs, enhancing support for 78% of the population. Research indicates that states with these councils tend to score higher on rare disease policy evaluations than those lacking them, reflecting the effectiveness of the grassroots advocacy driving their development.

Get Involved

NORD continues to work with a network of grassroots advocates to promote policies beneficial to over 30 million Americans with rare diseases. Currently, only about 5% of the more than 10,000 recognized rare diseases have an FDA-approved treatment, highlighting the critical need for continued advocacy and support. Individuals interested in making a difference can join NORD's Rare Action Network and learn more about the RDAC initiative.

Conclusion

Vermont's new Rare Disease Advisory Council represents a hopeful step forward for patients and families affected by rare diseases. Through collaboration and strong advocacy, this initiative promises to enhance the lives of many, positioning Vermont as a leader in rare disease policy and support.