Introducing the STAT Act

From Krista Vasi, Executive Director of the Usher Syndrome Coalition:

The Speeding Therapy Access Today (STAT) Act of 2021, H.R. 1730 / S. 670 was officially introduced earlier this week by Senators Amy Klobuchar (D-MN) and Roger Wicker (R-MS) in the Senate, and Representatives Gus Bilirakis (R-FL) and G.K. Butterfield (D-NC) in the House of Representatives.

This bipartisan legislation is a result of more than a year of collaborative effort by rare disease community partners and congressional leaders, working to identify opportunities to ensure that all rare disease communities receive access to safe and effective treatments and cures at the earliest moment possible.

What this means for the Usher syndrome community:  The Usher Syndrome Coalition is joining forces with the EveryLife Foundation for Rare Diseases to promote this legislation. The STAT Act could help advance efforts to develop treatments and find a cure for Usher syndrome, one of over 7,000 rare diseases affecting more than 30 million Americans.

The STAT Act establishes a Rare Disease Center of Excellence at the Food and Drug Administration (FDA) that will improve the development of and access to therapies for the rare disease community by:  

• Optimizing interagency coordination or rare disease expertise,
• Advancing science-based regulatory policies
• Targeting development for ultra-rare diseases, and
• Ensuring the intended patient populations ultimately receive access to approved therapies

About the Usher Syndrome Coalition

The mission of the Usher Syndrome Coalition is to raise awareness and accelerate research while providing information and support to individuals and families affected by Usher syndrome. We strive to be the most comprehensive resource for the Usher syndrome community, bridging the gap between researchers and families.

About the Louisiana DeafBlind Project

The mission of the Louisiana Deafblind Project for Children & Youth is to provide technical assistance and information dissemination to Louisiana students with combined hearing and vision loss, their families, schools, service providers, school districts, and the Louisiana Department of Education.