The Ollier Maffucci Association helps people affected by multiple enchondromatosis and Maffucci syndrome (Ollier-Maffucci disease).
The association was created in 1998 with just 2 patients. Elisabeth Martin, who suffers from the disease, and Hubert de Landevoisin, a family member concerned by it, created the association together. Today, it has over 120 members (patients, family and friends).
Our aim is to ensure that new patients suffering from this little-known disease are no longer left to wander alone. So we make sure that new patients and their families are welcomed, that we listen to them, answer their questions and direct them to the best doctors and reference centers in Paris and throughout France. The association also aims to exchange ideas and collaborate with healthcare professionals in order to obtain better care and raise awareness of the disease among the general public and the medical profession, by contributing to the creation of a European database on the disease, as well as creating links with patients and associations abroad: English, Italian, Norwegian, American…
Our commitments as a patient association
Listening and support
Informations
Scientific research
Events
Awareness