New tools for advocates to protect and advance one of America’s most successful public health programs
The EveryLife Foundation for Rare Diseases kicked off Newborn Screening Awareness Month with the launch of its newly updated Newborn Screening Action Center, a central place for rare disease advocates to join the fight to protect and advance newborn screening programs nationwide. Advocates are encouraged to visit the Action Center at RareScreening.org to learn how to support state and federal legislation, raise awareness in their local communities, and develop evidence to ensure newborn screening programs keep pace with science.
Newborn screening is widely recognized as one of the largest and most successful disease prevention programs in the history of the U.S. Yet, our nation’s newborn screening system is unsustainable, and our babies are at risk. The federal law that supports newborn screening programs expired two years ago. Currently, 33 states do not screen for all of the federally recommended conditions, leaving hundreds of babies undetected and without timely treatment each year. Newborn screening programs are in critical need of funding and resources. And limitations to the current system yield significant delays between the availability of a treatment and implementation of screening, putting infants and children at risk for preventable mortality and disability.
The Action Center is designed to provide a user-friendly way to access information about these critical issues and engage in policy and advocacy solutions.
New to the Action Center is a component called Finding Zebras. This resource provides information and opportunities to encourage positive partnerships between patient advocates and public health laboratories. Central to this offering is a new series of web pages focusing on diseases for which babies are not yet being screened or being screened in only some states. These pages are the result of the contributions and collaboration of multiple patient advocacy groups and include guidance on working together to advocate for screening implementation in all states.
Advocates may also visit the Action Center to register for the upcoming Newborn Screening Bootcamp, co-hosted by the EveryLife Foundation and Expecting Health at Genetic Alliance. This three-part virtual series provides a unique opportunity for stakeholders to learn about and discuss issues vital to newborn screening, including how to improve racial diversity within newborn screening and how to advocate for a condition to be added to a state screening panel.
Additionally, the Action Center features an interactive map where advocates can access in-depth information about newborn screening programs and health laboratories in their state, and how to engage in local advocacy efforts.
Advocates seeking to raise awareness in their networks may use the Action Center’s social media toolkit, including sample posts and a Facebook frame.
Coming soon to the Action Center is An Inside Look at State Labs, a video series providing a behind the scenes look at the challenges and opportunities of state labs, and the Newborn Screening Modernization Study, a roadmap for the future of newborn screening.
