Des sites référentiels pour les maladies rares.

Ecrit par RDC Team, il y a 4 mois

More information about the individual websites used in the Rare Disease Communities information search engine:

National Organization for Rare Disorders

The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them.


European Rare Disease Organisation

EURORDIS is a non-governmental patient-driven alliance of patient organisations representing more than 400 rare diseases patient organisations in over 40 countries.

Orphanet is a database of information on rare diseases and orphan drugs for all publics. Its aim is to contribute to the improvement of the diagnosis, care and treatment of patients with rare diseases.


National Institute of Health, Office of Rare Disease Research

The Office of Rare Disease Research (ORDR) Web site aims to answer questions about rare diseases and the activities of the ORDR for patients, their families, healthcare providers, researchers, educators, students, and anyone with concern for and interest in rare diseases.