Our actions to support 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 
• Etc. 

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. 

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.

AFM-Telethon innovates in the social and technological fields. It is initiating the creation of appropriate structures, and supporting development of new technologies and innovative disability aids that meet the needs of families. 

Facilitating respite for patients and families  

To allow patients and family caregivers to recharge, AFM-Telethon, along with its partner PRO BTP, created the Village Répit Familles concept. This innovative concept consists of welcoming patients and their caregivers to a holiday destination for a period of relaxation, respite and leisure, with appropriate medical and social care provided for patients 

Facilitating access to innovative disability aids  

Technical and home automation aids and information and communication technologies are vital for the autonomy of highly-dependent patients.   

In collaboration with the Regional departments, technical disability aid operators support individuals who so request in their needs assessment and in the search for the most appropriate solution, including computer access, home automation, communication, telephony, video games and night-time call signals. The disability aid operators also perform a technological watch on technical aids in France and Europe and inform the networks and the individuals concerned.  

In parallel, AFM-Telethon works to make information on products, players, resources, search for innovation and cost both visible and accessible.  

It also provides the individuals concerned with many resources, including technical data sheets, articles in VLM, AFM-Telethon's magazine for patients, a Technical Aids corner at Family Day events (meetings with manufacturers/product trials), etc. 

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.

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.