Our Mission

The Leukodystrophy Newborn Screening
Action Network
is dedicated to :

  • Advancing Newborn Screening for leukodystrophies and lysosomal storage disorders by building relationships with stakeholders, increasing awareness, and educating parent advocates;
  • Supporting newly-diagnosed families by acknowledging the trauma of diagnosis and working to improve the current psychosocial support system for the future;
  • Encouraging collaboration, coordinating efforts, and removing barriers between industry, advocacy groups, and parent advocates to ensure that families have access to the best, unbiased, accurate information about clinical trials
    and available treatments for their child.

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.

Resources

In the News

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For information on NBS
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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

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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
Hemoglobinopathies
Holocarboxylase Synthetase Deficiency
Homocystinuria
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
Adrenoleukodystrophy