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Patient Registry

If you or a family member has been diagnosed anywhere in the world with Leigh syndrome, please join the patient registry to make an important contribution to Leigh syndrome research.

Mia, USA

Leigh Syndrome Global Patient Registry

All Over The World

Largest LS registry in the world


Accessible and available data


Results are always reported back to the community

Cure Mito Foundation's Leigh syndrome global patient registry is foundational – it will catalyze basic research while also helping to get medicines approved by the regulatory agencies.

- Dr. Vamsi Mootha, MDHarvard Medical School, Massachusetts General Hospital, Broad Institute of MIT and Harvard

Patient Registry by the Numbers


diagnosed within 1 year from symptoms onset

2 years old

median age when diagnosed


Number of specialists seen

Cooper, USA

By enrolling into the registry:

  • You are being counted, no matter where you are in the world
  • You are helping improve understanding of Leigh syndrome
  • You are helping understand the burden of the disease
  • You are helping raise awareness and the need for treatments
  • You are letting researchers and industry know that we have a community interested in research
Join Now

Please join the registry and make a difference today!