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
Accessible and available data
Results
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
60%
diagnosed within 1 year from symptoms onset
2 years old
median age when diagnosed
1-31
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
