MitoGether is a consortium of French associations of people affected Par primary mitochondrial diseases, prepared in 2024. These include MELAS, Kearns-Sayre, and Leigh syndromes, Friedreich’s ataxia, certain forms of Charcot-Marie-Tooth disease, and Leber’s hereditary optic neuropathy.
The MitoGether consortium in France relies on a large national network of clinicians and researchers specialising in mitochondrial diseases. This network provides essential support to pharmaceutical laboratories, helping them to develop tomorrow’s treatments.
The 12 pilot associations of MitoGether
ACO2
ACO2 gene mutations
AFAF
Friedreich's ataxia
AFM-Telethon
All mitochondrial diseases
AGM
All mitochondrial diseases
AMMi
All mitochondrial diseases.
Barth Syndrome France
Barth syndrome
CMT-France
Charcot-Marie-Tooth disease
Lilly Rose
Alpers syndrome
Manon the Lionheart
GFM1 gene mutation
MTFMT
Leigh syndrome
Open your eyes
Optic Neuropathies
Warrior Gab & Co
Mt-ND5 gene mutation
ACO2 Gene Association
Diseases represented
Rare diseases linked to pathogenic variants of the ACO2 gene.
These are mainly:
Hereditary optic neuropathies (HON), mitochondrial blinding diseases; these are dominant optic atrophy (DOA) and recessive optic atrophy (ROA), which is rarer and more severe. The second most frequently found gene in DOA is ACO2, after OPA1.
Infantile cerebello-retinal degeneration (ICRD), with a severe syndromic clinical presentation, combining severe visual impairment with other disabling neurological disorders.
The purpose of the ACO2 GENE Association is to support medical research in finding therapeutic solutions for certain rare genetic mitochondrial diseases linked to mutations in the ACO2 (aconitase 2) gene, which is essential for the proper functioning of our cells and several of our vital organs.
All donations collected each year are donated to a French research team - MitoLab in Angers - to better understand the mechanisms of these serious diseases, identify and diagnose more patients in France and abroad, in order to find suitable therapies and target clinical trials.
The Association was created in 2019 by the parents of Juliette, a 21-year-old girl carrying an ACO2 gene mutation, who lives in the Paris region. After a long journey of medical wandering and a few years after their daughter's diagnosis with this rare disease, they decided to mobilize their loved ones, as well as other affected families, doctors, and researchers around this cause. The ACO2 GENE Association, under the 1901 law, is recognized as being of general interest and, in France, is eligible for an income tax reduction of up to 66% of donations made.
Friedreich's ataxia is a rare and progressive neurological disease of genetic origin. The association's administrators, who are affected by the disease or are caregivers, live with it every day and can therefore share their expertise with you. We rely on a Medical and Paramedical Council to inform patients and their loved ones about the disease and available support, improve care, fund daily assistance services, and on a Scientific Council to support research. For more than 40 years, the association has brought together patients, families, and caregivers in an intense community life, with a single goal: to defeat the disease.
All neuromuscular diseases, and in particular mitochondrial myopathies.
Founded in 1958, AFM-Téléthon is an association of patients and parents of patients affected by rare, progressive, and severely disabling muscle diseases, most of which are genetic. Mitochondrial myopathies are one of them.
Thanks to the Telethon, a unique fundraising and awareness-raising event that brings together 3 million participants every first weekend in December, AFM-Telethon is a major player in medical research for rare diseases in France and around the world. It has created its own laboratories that are at the forefront of innovative therapies for rare diseases (Généthon, Istem, Institut de Myologie) and, beyond that, supports more than 350 research programs and young researchers each year. It supports around 40 clinical trials currently underway or in preparation for rare diseases affecting the eyes, blood, brain, immune system, liver, muscles, and more.
Because a medical revolution is underway, and mitochondrial diseases must be at the heart of this movement, AFM-Téléthon supports research programs and has spearheaded the creation of international scientific networks dedicated to this very specific field of biology. In 2022, the association also organized the mitoNice congress, a major international mitochondrial medicine conference that brought together 300 experts in the field.
AFM-Téléthon also fights to ensure that the rights and citizenship of people with the disease are recognized and respected. To this end, it promotes research into innovative solutions in all areas, from diagnosis to local support, and advocates for access to innovative treatments and the implementation of public policies to intensify research and improve the quality of life of people with rare diseases. AFM-Telethon is the main funder of La Plateforme maladies rares (The Rare Diseases Platform) and its members.
The Association Guerrier Mitochondrial (AGM) is a non-profit organization (under France’s 1901 law) dedicated to informing, supporting, and guiding individuals affected by mitochondrial diseases, while raising public awareness about these rare and complex conditions. We operate throughout mainland France, Corsica, and the overseas territories (DOM-TOM), thanks to a network of regional delegates and volunteers close to the families.
Our Mission and Objectives
Inform and Raise Awareness: Promote understanding of mitochondrial diseases, their symptoms, and their impact among the general public, healthcare professionals, and institutions.
Support and Guide: Provide emotional and logistical support to families, and foster connections through our network of regional delegates.
Act Nationwide: Our delegates and volunteers ensure coverage across France, Corsica, and the overseas territories, so that every affected family can find a local contact.
Fund Research and Help Families: Raise funds to support scientific projects and improve patients’ daily lives through initiatives such as raffles, campaigns, lotteries, etc.
Make Patients’ Dreams Come True: Because hope and joyful moments are part of the fight.
Engage with Medical Experts: AGM participates in numerous webinars and meetings with reference centers and specialist doctors to:
Improve care practices,
Share families’ experiences,
Discuss the list of off-label medications and treatments that can enhance patients’ quality of life.
Key Initiatives
Participation in World Mitochondrial Disease Awareness Week, including the #LightUpForMito movement (lighting up monuments in green).
Awareness campaigns on social media: photo in front of a green background or with the official poster, sharing testimonials and reliable medical information.
Local and national events to inform, raise funds, and build community.
Since 2019, we have brought the international #LightUpForMito event to France, illuminating over 45 landmarks during the awareness week, with support from more than 30 city councils across France, Corsica, and the overseas territories.
Our Medical and Associative Network
AGM collaborates with specialized reference and competence centers:
CARAMMEL – Necker Hospital (Paris) and its constituent centers (Angers, Bicêtre, Nice/CALISSON, Strasbourg, etc.).
Regional competence centers, including those in Corsica and the overseas territories.
We also partner with numerous rare disease networks and patient associations:
We also partner with numerous rare disease networks and patient associations :
Connect with the Association Guerrier Mitochondrial (AGM) on all social media platforms:
📌 Facebook – Instagram – Twitter – LinkedIn 📌 Our official website 📌 Our YouTube channel, featuring informational videos on mitochondrial diseases and recordings of webinars with doctors and researchers.
The AMMi association was founded on June 1, 1998, by a young mother who lost her only child at the age of 10 months to a mitochondrial disease after nine months of diagnostic uncertainty. The association brings together and works on behalf of all forms of mitochondrial diseases in children and adults.
Its objectives and actions:
Create a network of families of patients with mitochondrial diseases to support them, connect them, inform them, etc., and establish a database and registry that can be used for research and clinical purposes.
Help families: listen, train, inform, guide, bring together, and if possible provide material support for out-of-pocket expenses (funeral costs, equipment, etc.).
Inform families of patients about the state of scientific advances and knowledge.
Support parents in setting up a parenting project, responding to their desire to have children with appropriate medical follow-up.
Organize a family weekend to bring members together to share and exchange ideas; invite researchers and clinicians for Q&A sessions, meetings, etc.
Promote and encourage scientific research on mitochondrial diseases and fund projects to the extent of our capabilities.
Organization and active participation in scientific conferences bringing together clinicians and researchers from all backgrounds working on mitochondrial diseases. For example: MeetOchondrie symposiums and workshops. • Participation in the creation and meetings of Reference Centers (Caramel and Calisson with affiliated centers and centers of expertise) for faster diagnosis and better care for each patient.
involvement in the establishment of Rare Disease Health Networks, representation on steering committees and various commissions. Due to the complexity of the pathologies, involved in several networks and connected between networks.
Co-founding member of the Rare Diseases Alliance created in 2000, member of the National Council (the AMMi participated in drafting advocacy documents concerning the various rare disease plans).
Co-founder and active member of the Maison du Cerveau (Brain Center) within the Aquitaine Neurocampus, in conjunction with Lyon and the ICM.
Co-founder of IMP in 2008 (International Mitopatients), bringing together eight of the main European member states and the UMDF (USA), AMDF (Australia), and Mito Canada for international countries.
Member of Eurordis, participates in monitoring, conferences, and various ERN (European Reference Network for Rare Diseases) working groups on neuromuscular disorders, rare epilepsies, etc. – AMMi received the gold medal from the French National Academy of Medicine for its involvement in disseminating information in 2013.
A patron, actor Guy Lecluyse, accompanies AMMi at all events and participates in all aid and support activities.
The Barth Syndrome Association aims to do everything possible to save lives by informing and raising awareness among families and doctors, conducting medical research, and finding a cure for Barth Syndrome, a serious and sometimes fatal genetic disease.
Our missions:
raise awareness of the disease among physicians, researchers, scientists, and the general public;
promote research by funding international research programs;
develop communication around education and care for families affected by the disease; and,
bring together all available information in one place.
Charcot-Marie-Tooth disease and related neuropathies.
Founded in 1990, CMT-France is an association dedicated to helping and supporting people with Charcot-Marie-Tooth disease (CMT) and related neuropathies, as well as their families. It is committed to breaking isolation, raising public awareness of this disease, and promoting research into curative treatments.
CMT is an inherited genetic neuropathy that attacks the peripheral nerves, resulting in loss of muscle strength, sensation, balance, and reduced mobility.
With its scientific council, annual meetings, and support network, the association is at the forefront of offering hope and solutions to the 40,000 people affected by CMT in France.
The Lilly Rose Association was born from a deep desire: to provide support, comfort, and guidance to seriously ill children and their families. Since 2012, through concrete and compassionate actions, the Lilly Rose Association has worked every day to break isolation, ease daily life, and offer moments of happiness to those who need it most.
Our missions:
Provide moral and logistical support to families during difficult times.
Organize solidarity events to raise funds for medical research and raise public awareness about rare genetic diseases, and more specifically Alpers syndrome.
Fund activities, outings, and stays for sick and/or hospitalized children.
The “Manon Coeur de Lion” association aims to raise funds and donations to support any project that can help people with mitochondrial diseases linked to the GFM1 gene.
The MTFMT Leigh Syndrome Association, a non-profit organization under the French law of 1901, aims to:
support research into Leigh Syndrome linked to the MTFMT gene.
raise awareness and recognition of this ultra-rare genetic disease among the public, the medical profession and health and social authorities, in particular to improve the state of scientific and medical knowledge and facilitate diagnosis.
Our association, Ouvrir Les Yeux, is dynamic and friendly. It brings together and supports people affected by rare eye diseases: Hereditary Optic Neuropathies (Kjer's disease and Leber's disease).
We offer peer support to break isolation.
We encourage research and engage in participatory research.
We raise awareness of these rare diseases among the general public through advocacy work with institutions.
We are members of the Rare Disease Alliance, Eurordis, CRMR Ophtara, the Sensgene sector and we work in partnership with the Rare Diseases Foundation, INSERM and the CNCPH.
Leigh syndrome, particularly linked to the mtND5 gene.
The Warrior Gab & Co association was created to raise awareness and fight against Leigh syndrome (mitochondrial disease), particularly linked to the mtND5 gene, by supporting medical research teams and laboratories as well as relatives and families affected by this disease, and if necessary helping patients who are medically unresolved or have a very rare diagnosis.
The association aims to promote disability inclusion and improve the living conditions of people with disabilities and their families. They do this by providing help and advice and by organizing and/or participating in awareness-raising and sporting events. These events enable people with disabilities to participate and have a significant impact on how illness and disability are viewed. They also bring happiness and well-being to the disabled children they support.
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