Washington, D.C. – On March 24, 2025, Virginia Governor Glenn Youngkin approved HB 1782, a bill that mandates the state to consider national recommendations when determining which conditions newborns are screened for at birth. This bill, sponsored by Delegate Richard Sullivan, received bipartisan and unanimous support in the legislature.
HB 1782 requires the state to review the federal Recommended Uniform Screening Panel (RUSP) recommendations and, if applicable, implement screening for new conditions within 36 months of addition to the RUSP. The state must also review current RUSP conditions that are not yet included in the screening program. This ensures that newborns are screened for pediatric-onset conditions that are devastating but treatable when diagnosed early, providing opportunities for lifesaving medical interventions.
The passage of HB 1782 is a testament to the relentless efforts of the patient community. Dozens of Virginia advocates met with their legislators, sent emails, and called offices, while more than 40 patient organizations rallied in support of the bill. Their relentless and passionate advocacy was the driving force behind the bill’s success.
Annie Kennedy, Chief of Policy, Advocacy, and Patient Engagement at the EveryLife Foundation for Rare Diseases, expressed her enthusiasm for the bill’s passage: “Thank you to the Virginia Legislature! With the approval of HB 1782, more than half of our nation’s newborn babies will now be born into states aligned with the RUSP. This is a monumental step forward in ensuring that all newborns have access to early and accurate screening for treatable conditions. We will continue to work on this issue, including supporting Wisconsin Senate Bill 145, a similar bill that was introduced in the Wisconsin legislature last week.”
The passage of Virginia HB 1782 highlights the importance of bipartisan cooperation in advancing public health initiatives. As Virginia moves forward with this groundbreaking legislation, it sets a precedent for other states to follow in prioritizing the health and well-being of their youngest residents.
To learn more about the legislation and newborn screening, visit RareScreening.org.
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About EveryLife Foundation
The EveryLife Foundation for Rare Diseases is powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading science-driven policy and regulatory research, activating the community to advocate for their rights and needs, and strengthening the rare disease community.
Contact:
Will Nolan
Chief Marketing Communications Officer, EveryLife Foundation for Rare Diseases
wnolan@rareadvocates.org
Emily Stauffer
Associate Director of State Policy, EveryLife Foundation for Rare Diseases
estauffer@rareadvocates.org
