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Health Systems Sustainability and Rare Diseases

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Rare Diseases Epidemiology: Update and Overview

Part of the book series: Advances in Experimental Medicine and Biology ((AEMB,volume 1031))

Abstract

The paper is addressing aspects of health system sustainability for rare diseases in relation to the current economic crisis and equity concerns. It takes into account the results of the narrative review carried out in the framework of the Joint Action for Rare Diseases (Joint RD-Action) “Promoting Implementation of Recommendations on Policy, Information and Data for Rare Diseases”, that identified networks as key factors for health systems sustainability for rare diseases. The legal framework of European Reference Networks and their added value is also presented. Networks play a relevant role for health systems sustainability, since they are based upon, pay special attention to and can intervene on health systems knowledge development, partnership, organizational structure, resources, leadership and governance. Moreover, sustainability of health systems can not be separated from the analysis of the context and the action on it, including fiscal equity. As a result of the financial crisis of 2008, cuts of public health-care budgets jeopardized health equity, since the least wealthy suffered from the greatest health effects. Moreover, austerity policies affected economic growth much more adversely than previously believed. Therefore, reducing public health expenditure not only is going to jeopardise citizens’ health, but also to hamper fair and sustainable development.

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Author information

Authors and Affiliations

  1. Istituto Superiore di Sanità, Viale Regina Elena 299, 00161, Rome, Italy

    Rita Maria Ferrelli

  2. Centro Nazionale Malattie Rare. Istituto Superiore di Sanità, Viale Regina Elena 299, 00161, Rome, Italy

    Marta De Santis, Amalia Egle Gentile & Domenica Taruscio

Authors
  1. Rita Maria Ferrelli
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  2. Marta De Santis
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  3. Amalia Egle Gentile
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  4. Domenica Taruscio
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Corresponding author

Correspondence to Rita Maria Ferrelli .

Editor information

Editors and Affiliations

  1. RDR and CIBERER, Instituto de Salud Carlos III, Madrid, Spain

    Manuel Posada de la Paz

  2. Centro Nazionale Malattie Rare, Istituto Superiore di Sanita, Roma, Italy

    Domenica Taruscio

  3. National Center for Advancing Translational Sciences, National Institutes of Health, Bethesda, Maryland, USA

    Stephen C. Groft

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Ferrelli, R.M., De Santis, M., Egle Gentile, A., Taruscio, D. (2017). Health Systems Sustainability and Rare Diseases. In: Posada de la Paz, M., Taruscio, D., Groft, S. (eds) Rare Diseases Epidemiology: Update and Overview. Advances in Experimental Medicine and Biology, vol 1031. Springer, Cham. https://doi.org/10.1007/978-3-319-67144-4_33

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