Our Mission

The Leukodystrophy Newborn Screening Action Network is a coalition of leukodystrophy patient advocates dedicated to championing the cause of newborn screening for leukodystrophies and lysosomal storage disorders.


We do not believe in wasting time and resources by starting from scratch with each new disorder. Instead, we want to build partnerships across the dozens of leukodystrophy groups so we can work together, coordinate our efforts, share resources and information and advance the goal of newborn screening for our entire family of disorders around the world.

Add Newborn Screening to your State

Click the map to check your state’s screening panel and details on how to add Newborn Screening to your State.


In the News

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Support Group

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Our Partners

We are funded through a group of patient advocacy groups and leukodystrophy families

3-Hydroxy-3-Methylglutaric Aciduria
3-Methylcrotonyl-CoA Carboxylase Deficiency
Argininosuccinic Aciduria
Beta-Ketothiolase Deficiency
Biotinidase Deficiency
Carnitine Uptake Defect
Citrullinemia, Type I
Classic Galactosemia
Classic Phenylketonuria
Congenital Adrenal Hyperplasia
Critical Congenital Heart Disease
Cystic Fibrosis
Glutaric Acidemia, Type I
Hearing loss
Holocarboxylase Synthetase Deficiency
Isovaleric Acidemia
Long-Chain L-3 Hydroxyacyl-CoA Dehydrogenase Deficiency
Maple Syrup Urine Disease
Medium-Chain Acyl-CoA Dehydrogenase Deficiency
Methylmalonic Acidemia (Cobalamin Disorders)
Methylmalonic Acidemia (Methymalonyl-CoA Mutase Deficiency)
Primary Congenital Hypothyroidism
Propionic Acidemia
S, Beta-Thalassemia
S, C Disease
Severe Combined Immunodeficiency
Sickle Cell Anemia
Trifunctional Protein Deficiency
Tyrosinemia, Type I
Very Long-Chain Acyl-CoA Dehydrogenase Deficiency