Great news for the rare disease community—Texas has taken a big step by adding Pompe disease to its newborn screening panel! This major advancement in protecting the health of Texas infants also marks a meaningful moment for the Acid Maltase Deficiency Association (AMDA), which celebrates its 30th anniversary that same month.
This achievement reflects not only legislative progress but also the enduring legacy of Tiffany House, the AMDA’s late president and a devoted advocate for newborn screening.
A Groundbreaking Policy Shift
In 2023, Texas took a bold step forward in rare disease care with the passage of House Bill 2478. With unanimous approval in the Texas House and a 30-1 vote in the Senate, Governor Greg Abbott signed the bill into law. This legislation, known as RUSP alignment, requires the Texas Department of State Health Services to begin screening for any condition added to the federal Recommended Uniform Screening Panel (RUSP) within three years.
The law also mandates annual reporting to ensure the state’s readiness to add future conditions and address the gaps in its screening program. While Texas already screens hundreds of thousands of babies each year, many federally recommended conditions had not yet been included. This delay left some infants undiagnosed until symptoms emerged.
“Early diagnosis and intervention through newborn screening save lives,” explained Tiffany House, Texas advocate and president of the Acid Maltase Deficiency Association. “Even a few days’ difference in the initiation of treatment can have a profound impact on the path that these children’s lives will take.” (EveryLife Foundation Blog)
Tiffany House’s Lasting Impact
Tiffany’s leadership was instrumental in helping Texas move toward timely, equitable screening. As a past member of the Texas Newborn Screening Advisory Committee, she worked tirelessly to improve health outcomes for infants affected by rare diseases.
Her commitment helped lay the foundation for this legislation. The addition of Pompe screening is not only a public health victory, it is a fulfillment of Tiffany’s vision and efforts.
Celebrating 30 Years of the AMDA
This development comes at a deeply meaningful time for the AMDA. As we mark 30 years of advocacy, education, and support for those affected by Pompe disease, we celebrate real progress that will change lives.
There is no better way to honor this milestone than knowing that every newborn in Texas will now have access to screening for Pompe disease, offering earlier diagnoses and better chances at lifelong health.
Advocacy in Action
The success of HB 2478 was made possible through a collaborative effort led by the EveryLife Foundation, the Texas Rare Alliance, and more than 60 patient advocacy organizations. Legislative champions included Representatives Stephanie Klick and Julie Johnson, and Senator César Blanco. State leaders also included essential language in the budget to ensure that newborn screening expansion is funded and sustainable.
“The signing of this bill into law sends a powerful message: Texas prioritizes the well-being of its newborns,” said Annie Kennedy, Chief of Policy, Advocacy, And Patient Engagement at the EveryLife Foundation. (EverLife Foundation Blog)
Join Us in Celebrating
We invite the Pompe community to celebrate this historic milestone with us. Share this news, honor Tiffany’s legacy, and help us keep pushing for stronger policies that give all babies the healthiest start possible.
Because for families facing Pompe disease, every day counts.
Want to Learn More About Newborn Screening?
Consider attending the 2025 Newborn Screening Bootcamp, a free virtual event co-hosted by the EveryLife Foundation for Rare Diseases and Expecting Health. Open to all, the bootcamp offers insights from experts and patient advocates involved in the newborn screening process.
Date: September 17, 2025
Time: 12:00 PM – 4:00 PM ET
Register at EverLifeFoundation.Org
This is a great opportunity to understand the broader impact of newborn screening and stay informed about key developments.
Learn more about the legislation and how you can support newborn screening at RareScreening.org
Learn more about the Texas Newborn Screening Program at dshs.texas.gov