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