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. 
Our Projects

Join the leukodystrophy Newborn Screening Action Network

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.

  • Would you like to tell your loved one’s diagnosis story?
  • Are you interested in working together with passionate and dedicated leukodystrophy parents, doctors and scientists?
  • Would you like to help change laws and save lives?
  • Would you like to share your newborn screening story?

We want you!

Reach out here!

Our Partners

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

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