Epidermolysis bullosa House Austria and Epidermolysis bullosa clinical networkReport as inadecuate

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Wiener klinische Wochenschrift

, Volume 129, Issue 1–2, pp 1–7

Example of a centre of expertise implemented in a European reference network to face the burden of a rare diseaseFirst Online: 01 December 2016Received: 02 December 2015Accepted: 09 November 2016DOI: 10.1007-s00508-016-1133-3

Cite this article as: Laimer, M., Pohla-Gubo, G., Diem, A. et al. Wien Klin Wochenschr 2017 129: 1. doi:10.1007-s00508-016-1133-3 Summary

Accurately addressing the diverse and complex issues of rare diseases RD in terms of prevention, recognition, diagnosis, treatment, care and research along key RD specificities, such as great heterogeneity, a limited number of patients, scarcity of relevant knowledge and expertise as well as enormous costs for patient care is a challenging task for healthcare providers and authorities that makes a supranational approach particularly feasible. The European Union has acknowledged RD matters by several initiatives, including efforts to implement national centres of expertise and European reference networks as well as a cross-border referral mechanism to foster access to expert services and to boost dissemination of clinical expertise and research activities. Exemplified by the EB House Austria, a centre of expertise for epidermolysis bullosa cross-linked with international reference partner institutions, this strategy proves its potential to be translated into optimized patient care and to meet the major medical, scientific, social and health-economic impact of RD.

KeywordsOrphan diseases European Union Epidermolysis bullosa CLINET EB House  Download fulltext PDF

Author: Martin Laimer - Gabriela Pohla-Gubo - Anja Diem - Christine Prodinger - Johann W Bauer - Helmut Hintner

Source: https://link.springer.com/

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