MONTPELIER — The National Organization for Rare Disorders (NORD®) today celebrated the signing of House Bill 46 into law by Governor Phil Scott, establishing a Rare Disease Advisory Council (RDAC) in Vermont.
This legislation, sponsored by Representatives Mary-Katherine Stone (Chittenden-14), Anne Donahue (Washington-1), and Daniel Noyes (Lamoille-2) and supported by NORD and patient advocates across the state, will ensure that Vermonters living with a rare disease have a formal voice in the state to address their unique and complex needs.
“NORD was born in New England more than 43 years ago, and today we see that legacy reflected in every corner of this region,” said NORD Chief Executive Officer Pamela K. Gavin. “But what moves me most about Vermont is the community that made this happen — patients and caregivers who showed up and turned a bill into a law. The challenges facing the rare disease community are immense and complex, and an RDAC is one of the most powerful tools a state can give its patients and caregivers to begin solving them together. I am so proud of what Vermont’s community achieved, and NORD will continue standing alongside them as this important work moves forward.”
Vermont’s council has two features that set it apart. Of its Vermont-based stakeholder membership, it includes a seat explicitly reserved for an older Vermonter living with a rare disease — a nationally rare provision that reflects the reality that rare diseases do not discriminate by age, and that aging patients in a rural state face compounding barriers to care. The council also includes a geneticist or genetic counselor, a seat that reflects the growing importance of cell and gene therapies: nearly 80% of rare diseases have a genetic origin.
The council launches at a pivotal moment. With the recent disbanding of the federal Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) — the national body that historically guided state newborn screening programs — states are increasingly on their own in navigating screening guidance. Vermont’s RDAC is empowered to develop policy recommendations identifying conditions for the Department of Health to consider as part of its screening guidance, giving Vermont an in-state expert body to help fill that void.
“After years of advocacy, I’m proud to see this bill pass, giving patients and families a stronger voice and better coordination in the care they need and deserve,” said bill sponsor Representative Mary-Katherine Stone.
The effort carried support from more than 30 patient organizations — including from the ALS Association, Friedreich’s Ataxia Research Alliance (FARA), the National Fragile X Foundation, the International Pemphigus & Pemphigoid Foundation, and the Ehlers-Danlos Society — reflecting the community-driven nature of the effort. Vermonters with lived experience of rare disease also testified alongside medical professionals from the Vermont Medical Society, the University of Vermont’s Larner College of Medicine, and the Vermont Department of Health.
“As a Vermonter living with a rare disease and an advocate for awareness and research, I’m grateful that our voices and lived experiences are helping shape future policy. Through collaboration and strong relationships, Vermont’s Rare Disease Advisory Council represents meaningful progress, and I’m deeply hopeful it will improve the lives of individuals and families across our state for generations to come,” said Mary Nadon Scott of Northfield, Vermont, a Friedreich’s Ataxia Research Alliance (FARA) Ambassador, 2025 NORD Rare Impact Award recipient, and patient advocate who testified before the Vermont legislature in support of the bill.
“I am so proud to live in Vermont, where our legislators listen to their constituents and chose to learn more about Vermonters living with rare diseases,” said Leslie Kanat, PhD, a NORD volunteer and parent of a child with Fragile X Syndrome, who testified before the Vermont legislature in support of the bill. “Approximately ten percent of Vermonters have a rare disease, and they will now have a voice in future policy decisions.”
The RDAC movement has grown rapidly: in 2020, just nine states had established a Rare Disease Advisory Council, covering 19% of Americans. Today, with Vermont’s signing, 34 states covering 78% of the country now have RDACs — a shift driven by sustained advocacy and a clear record of results. States with RDACs score statistically significantly higher on NORD’s State Report Card® for rare disease policy than those without them.
NORD works with thousands of grassroots advocates across the United States to advance federal and state policies that benefit the more than 30 million Americans who have a rare disease, defined as any disease that impacts fewer than 200,000 people.
Of the more than 10,000 known rare diseases, only approximately 5% have an FDA-approved treatment. Getting an accurate diagnosis can take years for some rare disease patients, and their direct medical costs have been shown to be three to five times higher than those of someone of similar age who does not have a rare disease.
Individuals can get involved and support their state’s rare disease community by joining NORD’s Rare Action Network® and learning more about NORD’s Project RDAC and Rare Disease Advisory Councils.
About the National Organization for Rare Disorders (NORD®)
With a more 40-year history of advancing care, treatments, and policy, the National Organization for Rare Disorders (NORD®) is the leading and longest-standing patient advocacy group for the more than 30 million Americans living with a rare disease. A nonpartisan, independent 501(c)(3) nonprofit, NORD is dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 350 patient organization members, is committed to improving the health and well-being of people with rare diseases by driving advances in care, research, and policy.
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SOURCE National Organization for Rare Disorders (NORD®)
