caa a22 4500 463203747 CHVBK 20180405153119.0 cr unu---uuuuu 170326e20071201xx s 000 0 eng 10.1007/s00103-007-0381-9 doi (NATIONALLICENCE)springer-10.1007/s00103-007-0381-9 Networking for rare diseases: a necessity for Europe [Elektronische Daten] [Ségolène Aymé, J. Schmidtke] Netzwerke für seltene Krankheiten in Europa Most rare diseases are life-threatening and chronically debilitating conditions, and the vast majority of them are genetically determined. Their individually low prevalence requires special combined efforts to address them so as to improve diagnosis, care and prevention. Though it is difficult to develop a public health policy specific to each rare disease, it is possible to have a global rather than a piecemeal approach in the areas of scientific and biomedical research, drug research and development, industry policy, information and training, social benefits, hospitalisation and outpatient care. In the recent past, several initiatives at EU and Member States levels have been taken and proved efficient in developing suitable solutions which are now having a positive impact on the quality of life of patients. These initiatives are presented here. They include the establishment of Orphanet, a database of rare diseases and orphan drugs providing an encyclopaedia of rare diseases and a directory of associated expert services, the funding of research networks to boost the collaboration between research teams, as well as the funding of networks of clinical centres of reference to better serve the patients and contribute to developing clinical research. Springer Medizin Verlag, 2007 rare diseases nationallicence EU initiatives nationallicence Orphanet nationallicence research networks nationallicence networks of clinical centres of reference nationallicence Seltene Krankheiten nationallicence EU-Initiativen nationallicence Orphanet nationallicence Forschungsnetzwerke nationallicence Klinische Referenzzentren für seltene Krankheiten nationallicence Aymé Ségolène Inserm, Orphanet Paris, Paris, France aut Schmidtke J. Medizinische Hochschule, Hannover, BRD aut Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz Steinkopff-Verlag 50/12(2007-12-01), 1477-1483 1436-9990 50:12<1477 2007 50 103 https://doi.org/10.1007/s00103-007-0381-9 text/html Onlinezugriff via DOI 1 research-article jats NATIONALLICENCE 856 40 https://doi.org/10.1007/s00103-007-0381-9 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Aymé Ségolène Inserm, Orphanet Paris, Paris, France aut NATIONALLICENCE 700 1- Schmidtke J. Medizinische Hochschule, Hannover, BRD aut NATIONALLICENCE 773 0- Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz Steinkopff-Verlag 50/12(2007-12-01), 1477-1483 1436-9990 50:12<1477 2007 50 103 Metadata rights reserved Springer special CC-BY-NC licence nationallicence BK010053 XK010053 XK010000 NATIONALLICENCE NATIONALLICENCE NL-springer