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WASHINGTON, D.C. – Today, Congresswoman Lori Trahan (MA-03), a member of the House Energy and Commerce Committee’s Health Subcommittee, secured unanimous House passage of the Creating Hope Reauthorization Act, her bipartisan legislation to reauthorize a critical program that drives development of new treatments for children with rare pediatric diseases. The bill cleared the full House of Representatives after unanimously passing in the House Energy and Commerce Committee in September.

“Every child confronting a rare disease deserves access to the most effective therapies available,” said Congresswoman Trahan. “The Creating Hope Reauthorization Act will ensure continued access to the treatments that families depend on today and strengthen the pathway for new breakthroughs that will define tomorrow’s standard of care. By supporting continued innovation, reducing barriers for researchers, and giving parents confidence that lifesaving options will remain within reach, this legislation represents meaningful progress for families across the country.”

Children make up as much as half of patients living with rare diseases, yet treatment options designed specifically for pediatric needs remain limited. Many are still receiving therapies initially developed for adults, often resulting in long-term complications even after the underlying disease is treated. The Creating Hope Reauthorization Act addresses this by extending the U.S. Food and Drug Administration’s (FDA) cost-neutral priority review voucher (PRV) program which incentivizes the development of treatments for rare pediatric diseases by awarding vouchers that speed up FDA review for future products. Since its creation in 2011, the PRV program has helped drive progress by issuing 53 vouchers for therapies targeting 39 different rare pediatric diseases.

Following passage today, the bill now moves to the Senate for further consideration.

Since joining the Energy and Commerce Committee in 2021, Trahan has spearheaded multiple bipartisan initiatives to improve pediatric health care. Last year, she secured House passage of her bipartisan Accelerating Kids’ Access to Care Act, which helps families of children with complex medical conditions access out-of-state care. She also authored the bipartisan Bolstering Research and Innovation Now (BRAIN) Act, aimed at strengthening research and treatment development for pediatric brain tumors, and the bipartisan Youth Poisoning Protection Act, which passed the House and would ban the consumer sale of lethal concentrations of sodium nitrite.

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