Disease-specific paths included
Patient-led mitochondrial discovery
Mito Discovery Alliance
Built by patients. Powered by partnership.
Join a patient-centered discovery community helping accelerate mitochondrial research, improve care, and create a more transparent way for patients to participate in the success of the research they help make possible.
Dynamic consent required
No account required
What we believe
Patients are partners, not data products.
People living with mitochondrial disease are experts in their own lived experience. The Alliance helps patients, caregivers, clinicians, researchers, and industry partners work together through transparent consent, trusted registry programs, and long-term participation.
Shared progress
How participation works
Join
Connect Mito Map
Choose a program
Manage consent
See impact
Disease programs
All Mitochondrial Disease Community
View programPOLG Discovery Program
View programTWNK Discovery Program
View programOPA1 Discovery Program
View programMELAS / m.3243A>G Program
View programLeigh Syndrome Program
View programResearch opportunities
Mitochondrial Natural History Readiness Study
15 minutes quarterly - 100 contribution credits
POLG Registry Completeness Sprint
20 minutes one time - 80 contribution credits
TWNK Patient Priorities Survey
10 minutes - 50 contribution credits
Mito Map integration
Summary sync without duplicating every record.
Mito Map remains the home for detailed health tracking. The Alliance stores selected derived summaries such as data completeness, freshness, verification, and participation metadata so patients can contribute without repeatedly entering the same information.