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
Phone: 888-900-6486
Help Line: 412-793-8077
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
Massachusetts Rare Action Network
1900 Crown Colony Drive, 4th floor
Quincy, MA 02169
Phone: 617-249-7300
Email: sofia.horan@rareaction.org
Leigh Disease Information Page – NORD
Leigh Syndrome – Genetics Home Reference US National Library of Medicine
Fact Sheet last updated on: 3/21/2023
_______________________________________________________________________________________________________
Disclaimer: INDEX is pleased to provide you this information. Please note, this information is not comprehensive, nor is it intended to take the place of professional advice. We encourage you to check other resources of such information. No endorsement by the University of Massachusetts Chan Medical School, DisabilityInfo.org, INDEX, or affiliates, should be inferred. We reserve the right to remove, to modify, or to add any information at any time, for any reason, and without notice.
Any information you may provide to update or further complete this information would be appreciated. Please contact us with comments. We appreciate your help.