Committed to scientific research as well as to the support of patients and their families, AFM-Telethon acts independently, guided only by the urgency of the progressive disease, for the benefit of patients.
A Board of Trustees comprising only patients and parents of patients
The strategy and action of the AFM-Telethon are established by a Board of Trustees, from its annual general meeting held once a year. Comprising 21 members, all of them patients or parents of patients, the Board of Trustees meets regularly to develop and track the policy of the AFM-Telethon.
Laurence Tiennot-Herment, mother to a child suffering from Duchenne muscular dystrophy, has been Chair of AFM-Telethon since 2003. She is also Chair of Genethon, the Institute of Myology and the Institute of rare disease biotherapies.
See the list of members of the Board of Trustees (in french)
A structure to serve patients and their families
In 2021, AFM-Telethon had 2,987 permanent volunteers and 569 employees, almost 74% of whom work directly for the social missions of the Association throughout France.
Spread throughout France and in close contact with patients, a network of volunteers and employees covers all skills:
The Telethon network: local teams made up of volunteers who coordinate organization of the Telethon throughout France and abroad with the Telethon for French people abroad;
Delegations made up of volunteers who represent the Association in the regions, advocate for patients' rights within local representative bodies and provide peer-to-peer support and advice to people affected by the disease;
Regional departments made up of salaried professionals who support patients and their families for health autonomy and independent living at each stage of the disease’s progression;
Interest groups made up of volunteers affected by the same disease or group of diseases who support fellow patients and their families and liaise with physicians and researchers.
The Scientific Advisory Board
The Board of Trustees is supported by a Scientific Advisory Board made up of volunteers. Chaired by Prof. Odile Boespflug-Tanguy, a geneticist and head of the Department of Neuro-Pediatrics at Robert Debré hospital in Paris, it comprises 85 scientists, physicians and international experts, recognized in their field, more than half of whom practice outside France.
The Scientific Advisory Board, which relies on an international network of 6,000 external experts, assesses several hundred research projects each year, from calls for proposals. Its role is to appraise the scientific projects proposed to AFM-Telethon and to give an opinion to the Board of Trustees, which is responsible for the final decision. It also proposes research themes to be explored and assesses the scientific quality of projects, both before and after. When the project is a strategic one, it is monitored by a strategic and therapeutic steering committee whose Chairs sit on the permanent committee of the Scientific Advisory Board.
Lastly, the Scientific Advisory Board regularly audits AFM-Telethon’s three laboratories (Genethon, Institute of Myology, I-Stem).
The Finance Committee
AFM-Telethon is assisted by a finance committee, comprising eight independent volunteer advisors from the world of business and finance. This body advises the Association on aspects of financial management, including the financial investment strategy, budget development, accounting and internal audit.
The Strategic Steering Committee
In 2018, as part of the deployment of the AFM-Telethon 2022 strategic plan, the Strategic Steering Committee (SSC) was created. It includes the chairs and the general and scientific departments of AFM-Telethon, of Genethon, of the Institute of Myology and of CECS-I-Stem, as well as the multidisciplinary departments of the Institute of biotherapies, in addition to the communication and public affairs departments.
The SSC is a body for discussion and sharing, and is also responsible for implementing and monitoring a shared pipeline of clinical projects or projects with clinical aims for the Association and its laboratories.