A reference service intended for people affected by a rare disease and professionals in the health and social sector, the Rare Info Service information and support service can be reached on 01 56 53 81 36 or 0 800 40 40 43 (free service and call ).

The Rare Diseases Alliance is a collective bringing together more than 230 patient associations. Its mission is to raise questions common to rare diseases and rare disabilities, of genetic origin or not, all actions of research, mutual aid, information, training and advocacy. This organization strives to raise awareness and recognition of rare diseases among the public, public authorities and health professionals, by providing information on the scientific, health and social issues linked to these conditions.

Since 2001, the Rare Diseases Platform has brought together around a hundred employees and numerous volunteers, mobilized to advance the fight against rare diseases and improve the lives of sick people and their families.

Orphanet is a unique resource, bringing together and improving knowledge on rare diseases, in order to facilitate and improve the diagnosis, care and treatment of patients with rare diseases. Orphanet's goal is to provide high-quality information on rare diseases and to enable equal access to knowledge for everyone.