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The Newborn Screening Alliance is a program of The ALD Alliance, which was established in 2012 as an ALD newborn screening advocacy organization. It was created to honor the memory of Aidan Jack Seeger, a boy from Brooklyn who lost his life to a disease that had both a valid newborn screening test and treatment...if only he and his parents had access to an early diagnosis that would have saved his life.
Aidan’s story is not unique. It is happening to children across the country, despite the rapid advancements in rare disease research and FDA-approved treatments. Through federal and state advocacy, institutional engagement, and public awareness, the goal of The Newborn Screening Alliance is to advocate for newborn screening nationally and to work towards streamlining the newborn screening process creating a more equitable system nationwide leading to saving our babies through early diagnosis, while saving millions of dollars in health care costs due to a late diagnosis. |
2026 Initiatives:
- Eradicate death by zip code
- Put the RUSP process back in action
- Advocate for RUSP screening for all military personnel
- Dried blood spot education & advocacy for retention for research (amici briefs filed in Michigan & NJ)
- Surge to Save funding for state newborn screen programs to implement RUSP-approved conditions
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Our mission is to advocate for ALD newborn screening & newborn screening for any disease with both a treatment and a newborn screening test that works.
This foundation's advocacy is always occurring on two levels: in the states and at the federal level. We don't want to live in a country where a zip code or state line could be the difference between life or death for a child. And we know you don't either.
Our goal is to ensure that every state has the funding it needs so that each state newborn screening lab is capable of testing its babies for ALL RUSP approved conditions.
In other words, eradicate “death by zip code.”
The data supporting our Surge request may be downloaded below:
