Texas Rare Alliance

Making Texas a State of Access for Nearly 3 Million Texas Rare Disease Patients.

Sign Up for the State of Access Newsletter

sign me up
TX Rare Logo

Texas Rare Alliance Mission

Texas Rare Alliance is dedicated to improving access and health outcomes for rare disease patients through education and advocacy.

We work to unite the stakeholders in the Texas rare disease community. Together we can make Texas a State of Access for rare disease patients.

1 in 10 Texans has a Rare Disease

1 in 10 Texans has a rare disease represented with red, white, and blue stars, and a Texas lone star totaling 10 stars.

Texans Living With Rare Disease

  • There are more than 7,000 rare diseases
  • 95% of rare diseases lack an approved treatment
  • Half of rare disease patients are children
  • Every childhood cancer is a rare disease

uniting a community of texas rare disease stakeholders

Texas Rare Alliance recognizes we need the participation of all stakeholders to ensure access to the diagnosis, rare disease therapeutics. We work to unite rare disease stakeholders to build a community that helps secure improved access and health outcomes for Texas rare disease patients.

Hands of multiple races connecting in a circle pointing to the TX Rare Logo in the middle.

Texas Rare Alliance Initiatives

Texas Rare Alliance chooses initiatives that help make Texas a State of Access for the rare disease community. We partner with individuals and organizations to advance initiatives that improve access for the Texas rare disease community.

project baby dillo

Project Baby Dillo aims to provide whole-genome sequencing to critically ill babies and children. Minutes matter in securing a rare disease diagnosis to help save the lives of critically infants and children and help achieve the best health outcomes possible.

More than 55 organizations signed on to support Project Baby Dillo. We invite you to join us in supporting Project Baby Dillo.

Project Baby Dillo logo drawing of the Texas state outline filled in with the Texas flag colors, red, white, and blue with a brown baby Armadillo in front holding blue bonnet flowers.
learn more
i want to help
A boy named Hunter Davis is "more than his QALY. QALYs are dangerous for rare disease patients like Hunter."

QALY Education

Texas rare disease patients depend upon access to medications and medical services to achieve the best health outcomes possible. Quality-adjusted life year (QALY) metrics act as an arbitrary and discriminatory barrier to access to medical services and medications for Texas rare disease patients.

texas rare disease caucus

The Texas Rare Disease Caucus is a Texas Rare Alliance initiative to promote awareness on how policy and funding impact the Texas rare disease community. Texas Rare Alliance, rare disease patients and caregivers, patient advocates, and other rare disease stakeholders seek Texas Senators and Representatives to establish a bipartisan Caucus.

Outside facing view of the Texas Capitol showing its structure of windows and pillars.
How copay works

copay accumulator reform

Copay accumulators harm Texas rare disease patients by restricting access to their medications. Patient assistance programs help improve patient adherence to medication and health outcomes. Copay accumulators are dangerous to Texas patients in the rare disease community and beyond.

state of access podcast

The Texas Rare Alliance State of Access Podcast is an advocacy call to action for the Texas rare disease community. Each week we’ll explore innovative collaborations and how together we will make Texas a State of Access for nearly 3 million rare disease patients.

Listen to the Texas Rare Alliance State of Access Podcast Trailer below now!

listen

Full episodes coming soon in November.

Back To Top