International Newborn Screening
Australia
Visit the Leukodystrophy Resource Research Org in Australia to learn more about newborn screening and resources for ALD in Australia.
Italy
Read the National Library of Medicine article titled: Newborn screening for X-linked adrenoleukodystrophy in Italy: Diagnostic algorithm and disease monitoring
Japan
Read the International Journal of Neonatal Screening article titled: Advanced Diagnostic System and Introduction of Newborn Screening of Adrenoleukodystrophy and Peroxisomal Disorders in Japan
The Netherlands
Read the Frontiers in Cell and Developmental Biology article titled: Adrenoleukodystrop
Taiwan
Read the Journal of Molecular Genetics and Metabolism article titled: Advanced Diagnostic System and Introduction of Newborn Screening of Adrenoleukodystrophy and Peroxisomal Disorders in Japan.
United Kingdom
Visit the Alex, The Leukodystrophy Charity (Alex TLC), a trusted and experienced organisation offering support and information for all those affected by leukodystrophy in the UK.
United States
Aidan Jack Seeger was a vibrant, compassionate, happy, healthy boy who was diagnosed with ALD at the age of 6 after developing vision and concentration problems. Aidan was misdiagnosed several times before finally receiving a diagnosis of ALD. He passed away eleven months later. If Aidan had been diagnosed sooner, he could still be alive and well today, pursuing his dreams.
Elisa Debellis Seeger promised her son that she would ensure that newborn screening for ALD would be added in New York that year. She made good on that promise with the successful introduction of Aidan’s Law in 2013. Since then, she has made it her mission to save other children. Beginning on February 1, 2024, with the addition of Kansas, ALD is now screened for in 41 states, but there is much work to be done.
For any questions on ALD Newborn Screening in the United States or to learn how you can help, don’t hesitate to get in touch with ALD Alliance/Aidan Jack Seeger Foundation.