Rare Disease Advisory Council
Thirty-four states have one. Texas does not.
A standing council that lets the state ask rare disease families what a policy will do to them — before it is written, rather than after. Texas came one Senate calendar slot away in 2025.
Thirty-four states have a Rare Disease Advisory Council. Of the five most populous — California, Florida, New York, Pennsylvania and Texas — four have one. Texas is the exception.
A Rare Disease Advisory Council is a standing body that advises the state on rare disease policy. It costs little, it makes no rules, and it gives agencies and legislators somewhere to ask before a decision is made rather than a complaint to field afterward.
Texas came close in 2025. The rest of this page is what a council is, why a bleeding disorders coalition is asking for one, and where the bill stands.
The basics
What counts as rare
In United States law, a rare disease is one affecting fewer than 200,000 people nationwide. That sounds like a small category until you count how many of them there are.
Rare diseases include every form of pediatric cancer, and cancers of the brain, pancreas, ovary, thyroid and stomach. They include sickle cell disease, many eye diseases and autoimmune conditions — and bleeding disorders.
Most are not tracked after diagnosis, so even the number of people affected is an estimate. And people with rare conditions face medical costs three to five times higher than people with common ones.
Figures from the National Organization for Rare Disorders. The under-200,000 threshold is the definition in the federal Orphan Drug Act of 1983.
Why we are asking
Small communities cannot be heard one at a time
Bleeding disorders are rare diseases. Around 3,000 Texans have hemophilia — roughly twenty people in a Texas House district. That is a number small enough to round away in almost any policy conversation, and the treatment is expensive enough that rounding it away is dangerous.
Every other rare disease community in Texas has the same problem, and each of them arrives at the Capitol separately, competing for the same handful of minutes. A few hundred small constituencies, each too small to register on its own.
An RDAC is the mechanism that fixes the arithmetic. Instead of several hundred communities each seeking a hearing, the state gets one standing table where the questions can be asked once, and the answer covers all of them. That is the honest reason this Coalition wants a council: not because bleeding disorders are special, but because they are small, and so is everyone else at that table.
How it works
What a council actually does
An RDAC brings the people who live with and treat rare conditions into the same room as the officials who make policy about them, on a standing basis rather than by invitation.
Who sits on it
- Patients and family members
- Physicians
- Researchers
- Hospitals
- Public health officials
- Patient organizations
What it produces
Recommendations to the Legislature and state agencies on the issues facing rare disease patients; identification of practices that are working in other states; and a standing source of expertise for agencies that would otherwise have none. It is advisory — it writes no rules and spends no money it is not given.
The value is in the timing. Without a council, rules and laws affecting rare disease patients get written without anyone in the room who lives with one, and the community finds out when the rule takes effect. A council moves that conversation earlier, which is cheaper for the state and safer for the patient.
Where Texas stands
One calendar slot away
HB 3554, 89th Legislature (2025) would have created a Texas Rare Disease Advisory Council.
It was filed on 28 February 2025 with ten authors and coauthors from both parties.
House Public Health heard it on 28 April 2025 and reported it favorably 12–0. It passed the Texas House 91–52 on 15 May, was received in the Senate the same day, and was never taken up.
It was not voted down. The session ran out before it reached the floor. No organization registered against it, and nobody in the Senate is on record opposing it.
The connection worth knowing about
One of the authors of HB 3554 was Rep. Dr. Tom Oliverson — the same member who carried HB 1508 in 2019, the bill that made March Bleeding Disorders Awareness Month permanent in Texas.
This community already has a relationship with a legislator who has put his name on a Rare Disease Advisory Council bill once. That is a far shorter distance to travel than starting cold.
The 90th Legislature convenes on 12 January 2027, and prefiling opens 9 November 2026. There is bill text, a unanimous committee vote, a recorded House majority and an author already on record.
No one from the bleeding disorders community appeared on the witness list for HB 3554 in 2025. Of everything on this page, that is the easiest thing to change.
Bill history, committee vote and witness list from Texas Legislature Online, HB 3554, 89th Legislature; witness list for House Public Health, 28 April 2025. State count as of May 2026, when Vermont became the thirty-fourth state to establish a council.
The ask
What we want Texas to do
Pass legislation establishing a Texas Rare Disease Advisory Council in the 90th Legislature.
If you are a legislator or staff: there is a bill that already passed the House, and an author who carried it. If you are a Texan living with a rare disease — bleeding disorder or otherwise — the most useful thing you can do is tell your own representative and senator that this matters to your family, by name and by district.
Where to next
Prefiling opens 9 November 2026
Work in a legislative office and want the bill history, the House vote record, or what other states’ councils look like? Write to us — we will send what we have.