About

One voice for every Texan with a bleeding disorder

Texas is too big for one organization to cover and too important for two to work separately. In 2012 our member organizations decided to speak with one voice on policy. This is what that voice says.

Our mission

Ensure patients with bleeding disorders have access to care at Hemophilia Treatment Centers, access to the full range of FDA clotting factor medications, and access to the full range of specialty pharmacy providers.

What each of those means

Three kinds of access. Losing any one of them puts the other two out of reach.

A treatment center Care at a Hemophilia Treatment Center — a specialist clinic where hematology, nursing, physical therapy and social work sit in one place. There are seven in Texas.

The full range of medication Every FDA-approved clotting factor product. These conditions do not respond uniformly, and the right product for one person can fail another.

A pharmacy that can supply it The full range of specialty pharmacy providers. A prescription nobody can fill on time is not access.

Our beginnings

Brought together in 2012, launched in 2013

In 2012 the Lone Star Chapter of the National Hemophilia Foundation and the Texas Central Hemophilia Association set out to build a statewide advocacy group. They brought together leaders from both chapters, a representative from a Hemophilia Treatment Center, and representatives of both national organizations — the National Hemophilia Foundation and the Hemophilia Federation of America.

The Texas Bleeding Disorders Advocacy Coalition launched the following year, in 2013, to connect advocates across Texas and work the same issues together rather than separately.

The names have all changed since. The Lone Star Chapter is now Lone Star Bleeding Disorders Foundation. The Texas Central Hemophilia Association is now Texas Central Bleeding Disorders. The National Hemophilia Foundation became the National Bleeding Disorders Foundation in 2023. The Coalition is still run jointly by those same two Texas organizations.

Where we stand now

One of five Advocacy Centers in the country

The Coalition is one of five Advocacy Centers designated by the National Bleeding Disorders Foundation, recognized for both its legislative work and its grassroots organizing. We work on state and federal legislation, and we have built working relationships with the Texas agencies and the health plans whose decisions shape what care people can actually reach.

A good deal of that work happens away from the Legislature — in Drug Utilization Review Board meetings, Preferred Drug List reviews and agency rulemaking, which are open to the public and thinly attended.

How we are set up

A network, not a separate organization

The Texas Bleeding Disorders Advocacy Coalition is a collaborative advocacy network operated jointly by its two member organizations, Texas Central Bleeding Disorders and Lone Star Bleeding Disorders Foundation.

It is not a separate charitable organization and does not raise money of its own. Membership, programs, camps, financial assistance and giving all run through the member organizations. What the Coalition does is narrower and deliberate: it speaks for the whole state with one voice on policy.

If you need care rather than policy, start with your member organization — Lone Star Bleeding Disorders Foundation for South Texas, Texas Central Bleeding Disorders for North and Central Texas. They run the programs and they can help faster than we can.

Where to next

What that looks like in practice

What we are asking for The positions the Coalition takes going into each session, and the reason behind each one. See the priorities → What has changed so far Laws passed, medications protected, and a bill carried by a Texas member of Congress. See the record → Who does this work The four people who coordinate the Coalition and represent it in Austin. Meet the team →

Take action in Texas