Leigh’s 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
New England Chapter of UMDF – We offer support to all sufferers and families of mitochondrial disorders regardless of diagnosis, suspected or confirmed.
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 – National Headquarters
55 Kenosia Avenue
Danbury, CT 06810
- Massachusetts Office
1900 Crown Colony Drive, 4th floor
Quincy, MA 02169
Leigh’s Disease Information Page – NINDS
Leigh’s Syndrome – Genetics Home Reference US National Library of Medicine
Fact Sheet last updated on: 5/22/2019