Rare diseases

European and international networks

The challenge posed by rare diseases is a public health priority that can only be overcome through partnerships that go beyond national borders. The European Reference Networks (ERN) for rare diseases, which are cross-border thematic networks of centers of particular experience, provide a reference framework for patient care through a high level of skills and promote access to tools such as registries, telemedicine and guidelines on best clinical practices.

The European Networks are also flanked by world-wide companies, such as the International Rare Diseases Research Consortium, IRDiRC or the International Society on Rare Diseases & Orphan Drugs, ICORD.