The Orphanet website is the most important European portal for information on rare diseases.

Orphanet publishes and updates every year the “Living with a rare disease in France” section which addresses in detail the many aids and devices available. Do not hesitate to consult all the glossary entries as well as the infographic “Living with a rare endocrine disease”.

Maladies Rares Info Service01 56 53 81 36 : is the reference information and support service on rare diseases. To be listened to, to be informed, to testify, to exchange.

Interactive presentation : which addresses themes such as “Living with your illness”, “living with your disability”, “being treated in the city”, “being treated in the hospital” is available in French.

Infographie :

Source : favamulti

« What is a rare disease » : Fondation Maladies Rares

The Rare Disease Platform brings together 6 French and Europeans organizations that are engaged in the fight against rare diseases: AFM Téléthon, Alliance Maladies Rares, Fondation Maladies Rares, Orphanet, Maldies Rares Info Service et Eurordis.

〉 The Rare Disease Platform of Necker hospital in available