NBS Around the World

HomeEvents for March 2023

Just as newborn screening varies from state to state within the U.S., it also varies from country to country

Not all countries share the details of their programs publicly, so we have done our best to consult with families, in addition to researching medical journals and international websites, to ensure that we have an accurate picture of what NBS looks like around the world.

USMap-Search_LDNBS_Tall_World_Globe

In contrast to the United States,

We have learned from international families that public opinion and advocacy often has little impact on the addition of conditions to their country’s Newborn Screening program. With that in mind, we present this information knowing that there is a possibility that little can be done to add leukodystrophies in many countries at this time.

As of now, there are only a few countries considering screening for ALD, and none that screen for Krabbe or MLD. Argentina is moving forward and hopes to add ALD in 2021. 

archangel-MLD-logoOur friends in the U.K. are doing incredible things and are in the process of helping change the entire NBS system there. They commissioned a study of the NBS programs of other countries that will be published later this year in an effort to restructure and improve their program. The U.K. does not readily accept research from the U.S. or other countries, so they are also working to publish studies on leukodystrophy treatments. You can read about their work here: https://www.archangel.org.uk/

Below is a chart with the most current information we collected. We will continue to update this information as we obtain data. If you have information to share, please contact info@ldnbs.org so that we can update our chart!

Worldwide NBS

  • Number of Conditions Screened
  • ALD Pending/Pilot

Worldwide NBS Con.

  • Number of Conditions Screened
  • ALD Pending/Pilot

To learn more please visit:

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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