Leigh Syndrome is a degenerative disease of the central nervous system. It usually begins before age two and leads to death in most afflicted children before age ten.
United Mitochondrial Disease Foundation (UMDF)
To promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.
8085 Saltsburg Road Suite 201
Pittsburgh, PA 15239
Help Line: 412-793-8077
Leigh Syndrome: National Organization for Rare Disorders (NORD)
NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
National Organization for Rare Disorders
55 Kenosia Avenue
Danbury, CT 06810
Massachusetts Rare Action Network
1900 Crown Colony Drive, 4th floor
Quincy, MA 02169
Leigh Disease Information Page – NORD
Leigh Syndrome – Genetics Home Reference US National Library of Medicine
Fact Sheet last updated on: 3/21/2023
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