European Reference networks for rare diseases: what is the conceptual framework?

Véronique Héon-Klin, Orphanet Journal of Rare Diseases 201712:137 doi:10.1186/s13023-017-0676-3

In February 2017, 24 European Reference Networks (ERNs) were established in a European legal framework, of which 23 are dedicated to rare or low prevalence complex diseases or conditions. More than 300 hospitals and 900 highly specialised teams are participating in the approved ERN.

The ERNs are an opportunity to explore these changes and turn them into assets for patients with unmet needs. If we succeed in promote knowledge exchange in such a way that patients will only be treated in duly justified cases in the “other” MS, then “the European social model in health” can be preserved under the current European treaties.

European Reference networks for rare diseases: what is the conceptual framework?