Why is newborn screening such an important part of our work?
In the excitement of a child’s birth, most new parents hardly notice the drops of blood that are collected for newborn screening to test for dozens of serious, life-threatening disorders. Too few physicians and patients understand how important a tool it is for saving children’s lives. Except for vaccinations, no other public health initiative has been more impactful.
In the US, nearly four million newborns are screened at birth each year for dozens of disorders. Experts believe newborn screening saves 12,000 children’s lives in the United States annually.
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Newborn Screening Resources
The reality is that the recent breakthroughs in gene therapy are offering new hope to patients with MLD, but these treatments are most effective if children get diagnosed before the onset of symptoms in the first year of life.
One of the most serious challenges for newborn screening is the scale. Developing a screening test that can be performed efficiently and cost-effectively on millions of babies is a massive undertaking. In the US, the Every Life Foundation for Rare Diseases has worked to eliminate these legislative delays by ensuring states screen for recommended diseases within a set time frame, but progress is slow.
MLD advocates are hard at work trying to get MLD added to the Recommended Uniform Screening Panel (RUSP).
More information coming soon!
MLD Voices | MLD on the Hill
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