Leigh’s Syndrome

Disability/Illness Description:

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.

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 RD, Suite 201
Pittsburgh, PA 15239
Phone: 888-317-8633
Help Line: 412-793-8077
Fax: 412-793-6477
Email: info@umdf.org

New England Chapter of UMDF – We offer support to all sufferers and families of mitochondrial disorders regardless of diagnosis, suspected or confirmed.
Phone: 888-317-8633
Email: nicole@umdf.org

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: 203-263-9938
Massachusetts Office
1900 Crown Colony Drive, 4th floor
Quincy, MA 02169
Phone: 617-249-7300
Fax: 617-249-7301

Information on Leigh Syndrome

Other Information:

NINDS Leigh’s Disease Information Page

Genetics Home Reference
US National Library of Medicine information on Leigh’s Syndrome

Fact Sheet last updated on: 1/18/2017