31 May 2012

Accessing quality healthcare

Illustration for article: Accessing quality healthcare
While waiting for a cure, the progression of neuromuscular diseases can be slowed down, and patient life expectancy and quality of life improved. In partnership with the medical sector and using Telethon donations, the French Muscular Dystrophy Association (AFM-Téléthon) is working towards this goal.

Fifty years ago...

When AFM-Téléthon was created in 1958, most physicians knew nothing about neuromuscular diseases and had no treatment to offer patients. Children suffering from the most serious pathologies, such as Duchenne muscular dystrophy, did not reach adulthood. One of the association's primary concerns was therefore to improve treatment for these diseases, slow down their progression by delaying the prediction of progression of skeletal deformations and the cardiac, pulmonary and other complications these can cause. The Telethon has provided the means for achieving this goal.

75 specialised consultations

AFM-Téléthon has encouraged the creation of a network of 75 multidisciplinary specialised consultations for adults and infants with neuromuscular diseases, which it partly funds. Similarly, to improve the quality of routine care, it raises awareness and provides local care givers (local physicians, private physiotherapists, etc.) with information about these diseases.

Discussing good practices

Additionnally, AFM-Téléthon supports research to improve treatment for neuromuscular diseases such as epidemiological studies of their symptoms and drug trials for common diseases which are likely to be relevant for neuromuscular diseases. To standardise the quality of care throughout the country, it also promotes discussing good practices. For example, it organized the Clinical research days, bringing experts together to report on medical progress and define recommendations on medical treatment for these patients.