title: [European Reference Networks : Consequences for healthcare in Germany].
abstract: Starting in 2017, European Reference Networks (ERNs) for rare disease patients will be established in the European Union. ERNs will pool expertise in clinical centres and will establish cross-border exchange mechanisms in order to facilitate access to diagnosis and care. The integration of ERNs in the German healthcare system will pose a significant challenge. The main issues include: (i) competition between national and European interests in the conflict of national responsibility and intended cross-border availability of healthcare services, (ii) the lack of a funding concept, and (iii) the establishment of ERNs in EU member states in which implementation of national action plans for people with rare diseases is lagging behind. The lower implementation pace of the centre model that is part of the German action plan and the higher level of detail of the ERNs in terms of services and activities provided will likely lead to an appreciation that achieved patient benefits are attributed to ERNs.
authors.affiliation: Zentrum für Seltene Erkrankungen und Institut für Medizinische Genetik und Angewandte Genomik, Universität und Universitätsklinikum Tübingen, Calwerstr. 7, 72072, Tübingen, Deutschland. holm.graessner@med.uni-tuebingen.de.
authors.forename: Holm
authors.initials: H
authors.lastname: Graessner
authors.affiliation: Zentrum für Kinder- und Jugendmedizin, Zentrum für Seltene Erkrankungen, Sektion Pädiatrische Nephrologie, UniversitätsKlinikum Heidelberg, Heidelberg, Deutschland.
authors.forename: Franz
authors.initials: F
authors.lastname: Schäfer
authors.affiliation: Zentrum für Seltene Erkrankungen, HELIOS Dr. Horst Schmidt Kliniken Wiesbaden, Wiesbaden, Deutschland.
authors.forename: Maurizio
authors.initials: M
authors.lastname: Scarpa
authors.affiliation: Frankfurter Referenzzentrum für Seltene Erkrankungen, Universitätsklinikum Frankfurt, Frankfurt am Main, Deutschland.
authors.forename: Thomas O F
authors.initials: TOF
authors.lastname: Wagner
mesh_terms: D003695:Delivery of Health Care / Q000458:organization & administration*; D005062:European Union / Q000458:organization & administration*; D005858:Germany; D006078:Government Programs / Q000458:organization & administration*; D038622:Internationality; D017146:Models, Organizational; D035583:Rare Diseases / Q000175:diagnosis* / Q000453:epidemiology / Q000628:therapy*
keywords: European Reference Networks; Healthcare; National Action Plan for Rare Disease Patients; Rare diseases