AFM-Telethon is battling on all fronts, from access to diagnosis and appropriate treatment to close support, giving priority to the search for innovative solutions and a response to the needs of patients.
AFM-Telethon ensures that the medical care of neuromuscular patients is effective throughout France and adheres to best international practices.
The Association has instigated the creation of a network of specialized multidisciplinary consultations for adults and children, for overall care of patients affected by a neuromuscular disease anywhere in France. Families can access various specialists in the same location (including neurologists, cardiologists, pneumologists, psychologists) under the responsibility of a referring physician or coordinator. As part of a dedicated call for proposals, the Association supports consultations by financing positions or equipment (49 consultations supported in 2021).
AFM-Telethon works with health professionals to inform them about the treatment of patients on a daily basis, and helps them to preempt emergency situations through the following:
- Organizing meetings and seminars, disseminating publications
- Coordinating theme-based work groups according to specialty
- Supporting development in the regions of health professional networks
Support organisations overseas
AFM-Telethon provides financial assistance to associations abroad to enable them to improve care of neuromuscular patients:
- ALAN maladies rare Luxembourg, which offers a socio-therapeutic consultation service to people affected by a neuromuscular or rare disease throughout Luxembourg;
- Fondation internationale Tierno et Mariam (Burkina Faso and Guinea Conakry) and ROAMY project (west African myopathy treatment network: Mali, Senegal, Togo, Benin, Niger, Guinea) to finance training for physicians and paramedics and to help provide diagnosis assistance and information for patients.
Support patients and their families
To ensure that patients and their families receive close support, the employees and volunteers of AFM-Telethon operate in a network, working throughout the entire country, keeping the notion of charity alive.
Regional departments: support at each stage of the disease
The 16 Regional departments spread throughout 26 sites in France comprise 176 professionals from the world of medicine and social care, including healthcare pathway advisers. A position created by AFM-Telethon in the Regional departments, the healthcare pathway adviser is the sole contact who supports families in developing and implementing their plans, from diagnosis and course of care, to schooling, employment, the search for human or technical assistance and access to rights. Support for health autonomy in the long term to find solutions at each stage of life and of the disease.
Delegations at the level of the “départements”: providing local support
The 69 delegations, coordinated by volunteers affected by a neuromuscular disease, represent AFM-Telethon at the level of the “départements” and convey patients’ requests to policy makers and institutional partners.
The delegations also provide local support to patients and their families. They help with information, prevention and combating isolation by listening and organizing social exchanges.
Interest groups: experts in a pathology or group of pathologies
AFM-Telethon interest groups are organized according to a disease or group of diseases.Their members affected by a neuromuscular disorder share similar concerns and have developed expertise on their disease. They share this expertise with the families and liaise with physicians and scientists in order to further the medical care and the development of treatments. There are 9 of them.
A group for the youngest
The national Jeunes de l’Association group was founded in 2020 to link up young people aged 18-30 affected by a neuromuscular disease, whether they are patients, siblings or friends.
Defending patients’ rights
Since it was founded, AFM-Telethon conveys the voices of patients. It advocates to improve the civil status of people with disabilities, defend patients’ access to innovative treatments and to appropriate medical care.
Taking action for rare diseases
AFM-Telethon fights for the recognition of rare diseases and pushes for a public policy that solves the challenges of the millions of people affected.
It was the driver for the creation and funding principle - through Telethon donations - of the rare diseases platform, a unique resources center featuring the main French and European parties involved in the fight against rare diseases.