Resources

Created in 2000, the Alliance des Maladies Rares was founded on a common desire to contribute to a better quality of life for all sufferers. As the legitimate spokesperson for the 3 million people in France affected by rare diseases, it raises awareness among the general public, health professionals and institutions. Its expertise as an association has a direct impact on public health policies and encourages advances in clinical and scientific research.

Since 1994, the AFCA has been fighting the disease and providing support to patients suffering from all types of amyloidosis. It brings together all the energy, life stories and knowledge of patients, their families, carers, doctors, paramedical/social professionals and researchers.

The Association des Patients de la Maladie de Fabry (APMF) is the first French association exclusively dedicated to patients with Fabry disease. It provides a space where patients and their families can talk, listen, receive support and information, and also aims to increase knowledge about Fabry disease.

The aim of the Ligue contre la Cardiomyopathie (League against Cardiomyopathy) is to support patients by listening to them and putting them in touch with the relevant services and help provide and maintain hope for those affected by the disease by funding research projects.