ALD Newborn Screening

Have you just received a diagnosis of Adrenoleukodystrophy through a newborn screening?

Through ALD newborn screening, affected children have the opportunity to benefit from life saving treatment.

Letter from an ALD Mom

“You will have the constant support and guidance of ALD specialists and other ALD parents. You are not alone.”

an Adrenoleukodystrophy Overview

What is ALD?

Adrenoleukodystrophy, or ALD, is a deadly genetic disease that affects 1 in 17,000 people. As it is an X-linked genetic disease, which means it most severely affects boys and men.

How do you get ALD?

ALD disease is a genetic, or inherited, disorder. If a mother is a carrier of ALD, there is a 50% chance of passing this on to her children. If a father is a carrier of ALD, he will pass this on to his daughter. 

ALD is diagnosed through a blood test, which analyzes the amount of very long chain fatty acids, which are elevated in ALD. Genetic testing will confirm the diagnosis. An MRI diagnoses cerebral ALD.

The ALD Alliance is Counting on You.

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States Testing


Babies Diagnosed

As of September 2023