Leigh Syndrome

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.

Associations/Groups:

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
Phone: 888-900-6486
Help Line: 412-793-8077
Fax: 412-793-6477
Email: info@umdf.org

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
Phone: 203-744-0100
Fax: 203-263-993

Massachusetts Rare Action Network
1900 Crown Colony Drive, 4th floor
Quincy, MA 02169
Phone: 617-249-7300
Fax: 617-249-7301   Email: amy.patterson@rareaction.org

Other Information:

Leigh Disease Information Page – NORD

Leigh Syndrome  – Genetics Home Reference US National Library of Medicine

Fact Sheet last updated on: 10/27/2021

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