Founded in 1998, the Ollier-Maffucci Association Europe is a non-profit organization dedicated to supporting people with Ollier disease and Maffucci syndrome, and their families. These rare bone diseases, characterized by multiple enchondromas and, in the case of Maffucci syndrome, vascular malformations, can lead to skeletal deformations and other complications.
The association is committed to guiding patients towards competent healthcare professionals, promoting their social and professional integration, studying the impact of the disease on their daily lives, and contributing to the development of research in collaboration with its Medical and Scientific Council. It also works to identify patients and specialist practitioners, listen to, support and inform patients and their families, and exchange knowledge with other European associations.
Ollier disease and Maffucci syndrome are two rare diseases that generally appear in childhood. They are characterized by enchondromas, benign tumors of the cartilage inside the bones, which can cause deformities, fractures or pain. Maffucci syndrome also includes blood vessel malformations.
These diseases evolve mainly during growth, then tend to stabilize in adulthood. Regular medical follow-up is essential throughout life, as there is a risk of complications, including malignant transformation of certain lesions.
Even if the causes remain poorly understood, research is progressing, and information for patients and professionals alike is essential to improve management.