AFM-Téléthon

Established in 1958, the French Muscular Dystrophy Association (AFM-Telethon) was founded by a group of parents, led by Yolaine de Kepper, who were determined to combat the ignorance and powerlessness surrounding neuromuscular diseases. Headquartered in Paris, France, AFM-Telethon operates as a legally recognized association under the 1901 law. The organization gained state-approved charity status in 1976, marking a significant milestone in its journey.

AFM-Telethon exists to support individuals affected by rare, progressive, and significantly disabling genetic diseases, particularly genetic neuromuscular diseases. The organization aims to drive scientific, medical, social, and technological innovation to improve the lives of patients and their families. Its core missions include curing diseases, providing care, and communicating to raise awareness and understanding.

AFM-Telethon primarily supports patients with genetic neuromuscular diseases, which are rare, progressive, and often severely disabling. These conditions include Duchenne muscular dystrophy, spinal muscular atrophy, and other related disorders.

AFM-Telethon engages in a variety of activities to fulfill its mission:

• Advocacy: Defending the rights of patients and promoting recognition for rare diseases.
• Education: Raising awareness and understanding of rare diseases among the public and healthcare professionals.
• Direct Support Programs: Providing support and resources to patients and their families.

AFM-Telethon offers concrete assistance to patients and their families through various means:

• Information Hotlines: Providing access to information and support for patients and families.
• Consultations: Facilitating multidisciplinary consultations for comprehensive patient care.
• Educational Materials: Disseminating information to improve understanding of rare diseases.
• Workshops: Organizing events to educate and support patients and their families.

AFM-Telethon has been instrumental in several key accomplishments, including the creation of Genethon, a pioneering genetics and gene therapy laboratory. The organization has also played a significant role in the development of the first maps of the human genome and the successful use of gene therapy for rare diseases.