Orphanet and Its Role in Supporting People with Rare Diseases; by Professor Odile Kremp, MD, PhD Director Orphanet
Odile Kremp presented Orphanet INSERM which is a reference portal for information on rare diseases and orphan drugs for all audiences. It was founded in 1997 on the initiative of the French Directorate General for Health and the Inserm (French Institute of Health and Medical Research). The infrastructure and coordination activities are jointly funded by Inserm, the French Directorate General for Health and the European Commission.
Orphanet aims to help improve the diagnosis, care and treatment of patients with rare diseases, and to provide information on developments in research and new therapies. The database of detailed abstracts is available in seven different languages.
The Orphanet Encyclopedia for the General Public began with the 1st French National Plan for Rare Diseases (2005-2008). It is intended for patients, their families and the general public. It is also used by health professionals, teachers and social workers. Furthermore, the Encyclopedia is used as a resource by the French help line for rare diseases (Maladies Rares Info Services).
The positive outcomes of the portal are the creation of a European hotline of rare diseases, the publication of 25 information and emergency cards for patients and professionals, the creation of the encyclopaedia for patients and its support to Orphanet at a European level.