Adrenoleukodystrophy

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What is adrenoleukodystrophy? 

Adrenoleukodystrophy (ALD) is one of a group of neurological conditions known as the leukodystrophies. Leukodystrophies are disorders that result from abnormalities in myelin, the “white matter” that protects nerve fibers in the brain and spinal cord.

ALD, also known as X-linked adrenoleukodystrophy or X-ALD, is a genetic disease that results from a mutated (defective) gene on the X chromosome.

People with ALD accumulate high levels of saturated, very long chain fatty acids (VLCFA) in the nervous system and adrenal cortex (the largest part of an adrenal gland). There are two adrenal glands, one located on top of each kidney. Loss of myelin and progressive dysfunction of the adrenal glands are primary characteristics of ALD.

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Learn About Clinical Trials
Clinical trials are studies that allow us to learn more about disorders and improve care. They can help connect patients with new and upcoming treatment options.

How can I or my loved one help improve care for people with adrenoleukodystrophy? 

Consider participating in a clinical trial so clinicians and scientists can learn more about ALD and related disorders. Clinical research uses human volunteers to help researchers learn more about a disorder and perhaps find better ways to safely detect, treat, or prevent disease.

All types of volunteers are needed—those who are healthy or may have an illness or disease—of all different ages, sexes, races, and ethnicities to ensure that study results apply to as many people as possible, and that treatments will be safe and effective for everyone who will use them.

For information about participating in clinical research visit NIH Clinical Research Trials and You. Learn about clinical trials currently looking for people with ALD at Clinicaltrials.gov. 

Where can I find more information about adrenoleukodystrophy? 

The following organization and resources help people living with ALD and their families, friends, and caregivers:

Global Foundation for Peroxisomal Disorders
Phone: 405-418-6061

MedlinePlus

National Organization for Rare Disorders (NORD)
Phone: 203-744-0100 or 800-999-6673; 844-259-7178 Spanish

National Tay-Sachs and Allied Diseases Association
Phone: 617-227-4463 

PubMed

United Leukodystrophy Foundation
Phone: 815-748-3211 or 800-728-5483

Learn about related topics 

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Order publications from the NINDS Catalog
The NINDS Publication Catalog offers printed materials on neurological disorders for patients, health professionals, and the general public. All materials are free of charge, and a downloadable PDF version is also available for most publications.