Key Takeaways
- Thirty-four states now have a Rare Disease Advisory Council. As of May 2026, when Vermont became the most recent state to establish one, RDACs cover 78% of the U.S. population.
- The movement is barely a decade old. North Carolina created the first council in 2015, and as recently as 2020 only nine states had one.
- Councils produce measurable policy results. States with an RDAC score significantly higher on the National Organization for Rare Disorders’ annual State Report Card than states without one.
- Nevada has had a council since 2019. The Nevada Rare Disease Advisory Council was created by Senate Bill 315 and operates under NRS 439.5077 within the Department of Health and Human Services.
- Nevada’s needs assessment puts it ahead of most states. 206 Nevada families reported 151 distinct diagnoses, and most saw five to seven providers before receiving an accurate diagnosis.
- Existing councils are not permanent. Ohio’s council was targeted for elimination in the 2025 state budget, a reminder that this infrastructure has to be defended after it is won.
A note from the Chair of the Nevada Rare Disease Advisory Council:
When we asked Nevada families living with rare diseases to tell us about their road to a diagnosis, one story stayed with me. A Nevadan with Ehlers-Danlos syndrome, a connective tissue disorder, spent years being told the pain was ordinary, or stress, or nothing at all. By the time the right answer finally came, the delay had already done permanent damage. An earlier diagnosis could not have cured the disease, but it could have prevented harm that is now irreversible.
Our needs assessment showed that this story is not unusual. Only the diseases are. Across 206 Nevada families who responded, we counted 151 different diagnoses. On average, families saw five to seven doctors before anyone could name what was wrong. For some, the search stretched past five years and ten specialists. Behind each of those numbers is a person who spent years unseen by a system that did not know where to look.
That is why Nevada has a Rare Disease Advisory Council. It is also something I do not take for granted, because for most of American history, no state had one.
What is a Rare Disease Advisory Council?
A Rare Disease Advisory Council, commonly called an RDAC, is an official state advisory body created by state law or by a governor’s authority that gives the rare disease community a formal voice in state government. Councils bring together patients, caregivers, clinicians, researchers, and state agency representatives to identify barriers to care and recommend policy solutions to legislators and health departments.
The reasoning behind them is straightforward. Rare disease affects roughly one in ten Americans, more than 30 million people, but that population is fragmented across thousands of individual conditions. No single diagnosis carries enough weight on its own to reach the statehouse. An RDAC consolidates that scattered experience into one standing body with a permanent seat at the table.
How many states have a Rare Disease Advisory Council in 2026?
As of May 2026, 34 states have established a Rare Disease Advisory Council, covering 78% of the U.S. population. Vermont is the most recent addition, with Governor Phil Scott signing House Bill 46 into law on May 20, 2026. NORD maintains a current map of councils by state.
The growth curve is steep. The first council was established in North Carolina in 2015. In 2020, only nine states had one, reaching roughly 19% of Americans. Much of the acceleration since traces to a deliberate national effort: the National Organization for Rare Disorders launched its Project RDAC initiative in November 2020 with the goal of a council in every state, and has directly contributed to the creation of approximately 25 of the councils now operating.
The reach now extends to the country’s largest states. Of the five most populous, four have RDACs: California, Florida, New York, and Pennsylvania. Texas does not. Geography still decides whether a family is heard.
Do Rare Disease Advisory Councils actually work?
The evidence says yes. States with an RDAC score statistically significantly higher on NORD’s State Report Card, the annual assessment of state rare disease policy, than states without one. The council is not a symbolic gesture. It measurably moves outcomes.
That report card offers useful context for how much room remains. Now in its eleventh year, it evaluates all 50 states and the District of Columbia across nine policy areas, including Medicaid eligibility, prescription affordability, telehealth, insurance protections, and medical nutrition coverage. In the most recent edition, the nation earned an overall grade of B, and only four states earned an A.
Why do state councils matter more as federal support recedes?
States are increasingly carrying responsibilities the federal government is setting down. Vermont’s council launched shortly after the disbanding of the federal Advisory Committee on Heritable Disorders in Newborns and Children, the body that long guided newborn screening recommendations nationwide. As that federal scaffolding comes down, state councils become the front line for protecting screening, access, and coverage.
How are newer councils evolving?
The councils themselves are maturing, and their membership requirements show where the field is heading. Vermont reserved a seat for a geneticist or genetic counselor, recognizing that nearly 80% of rare diseases have a genetic origin and that cell and gene therapies are becoming central to treatment. Vermont also reserved a seat for an older resident living with a rare disease, a provision almost no other state has adopted, reflecting the compounding barriers that aging patients face in rural areas.
Genetic counseling access is precisely the frontier Nevada is already working on.
Can a state lose its Rare Disease Advisory Council?
Yes, and one nearly did. In 2025, language eliminating Ohio’s Rare Disease Advisory Council was included in the state’s biennial budget bill, prompting testimony from council members, patient organizations, and NORD urging the legislature to strike it. The Ohio council remains established under section 103.60 of the Ohio Revised Code. For councils across the country, it was a stark reminder that this kind of progress has to be protected after it is won.
The countervailing trend is just as instructive. Several states, including Michigan, New York, Utah, and Washington, have introduced legislation to extend or strengthen the councils they already have. The states moving forward treat an RDAC as essential infrastructure rather than an optional line item.
How was Nevada’s Rare Disease Advisory Council created?
The Nevada Rare Disease Advisory Council was created by Senate Bill 315 during the 2019 session of the Nevada Legislature and sits within the Department of Health and Human Services. Its duties are set in statute at NRS 439.5077 and include performing a statistical and qualitative examination of the incidence, causes, and economic burden of rare diseases in Nevada; developing a comprehensive plan for the management of rare diseases in the state; building a registry of rare diseases diagnosed in Nevada; and compiling an annual report to the Governor and Legislature summarizing the Council’s activities and recommendations.
Council membership includes physicians who care for rare disease patients, registered nurses, hospital administrators, adults living with a rare disease, parents and guardians of affected children, and representatives of state agencies and service organizations. Meetings are open to the public.
Where does Nevada stand in the national picture?
I will be direct. Nevada is not following this movement. In meaningful ways, we are helping lead it. Our recent 360-degree needs assessment, gathering both patient and provider perspectives, is work most state councils have not yet attempted. As the national conversation turns toward genetic counseling access and the defense of newborn screening, we are already there.
The national snapshot tells a clear story. Rare Disease Advisory Councils have moved from experiment to expectation. They are growing, they are proven, and they are increasingly where the rare disease community’s voice becomes state action.
For the Nevadan whose diagnosis came too late, and for the 206 families who shared their stories with us, the difference is not abstract. It is whether their state has somewhere to turn, a body whose purpose is to listen and to act. Nevada has that. If you live with a rare disease in this state, or care for someone who does, the Council exists so that your experience reaches the people who write the rules.
Frequently Asked Questions
About Rare Disease Advisory Councils