About Us
History
Founded in 1998
The association is recognized as a charity and public benefit organization
A.M.Mi (Association against Mitochondrial Diseases) brings together and supports families affected by all forms of mitochondrial diseases, whether they affect children or adults.
These rare and complex pathologies, which turn lives upside down, remain too little known. However, our network, which now includes over 800 families, is driven by a shared desire: not to face the disease in isolation and to actively contribute to research progress.
By our side since 2008, our patron, actor Guy Lecluyse, embodies this support. Through his generosity and availability, he encourages families, strengthens our actions, and upholds our values of solidarity.
Our Achievements in 27 Years
- Establishment of a Scientific Council bringing together international experts (clinicians, geneticists, researchers)
- Direct contribution to the accreditation of Reference Centers
- Ongoing support for the Diagnosis, Quality, and Research network.
- Annual organization of scientific conferences (including the meetOchondries network).
- Development and dissemination of PNDS (national diagnostic and care protocols)
- Deployment of a network of regional delegates (trained and supported), in France and internationally (Overseas Departments and Territories, Belgium)
- Active participation in National Rare Disease Plans, Orphanet, Eurordis, and numerous health collectives
- Regular involvement in rare disease pathways and European networks (ERNs)
Distinction :
Gold Medal from the National Academy of Medicine –
December 17, 2013
Our commitment: to provide compassionate and rigorous support
The A.M.Mi Association is committed to supporting families, breaking isolation, improving daily life, and supporting research for a treatment.