Heyder Ralf
Verband der Universitätsklinika Deutschlands e. V., Alt-Moabit 96, 10559, Berlin, Deutschland.
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2017 May;60(5):487-493. doi: 10.1007/s00103-017-2528-7.
The founding of the National Action League for People with Rare Diseases (NAMSE) in 2010 represents the creation of a significant political platform. In addition, recent years had seen Germany and the EU adopt specific legislative measures aimed at improving healthcare for people with rare diseases.
In this article we will give an overview of the legislative reforms adopted between 2013 and 2016 and evaluate how the specific healthcare situation of people with rare diseases has been improved.
This article analyzes the health care legislative reforms adopted during the 18th term (since 2013) of the German lower house, the Bundestag, as well as their self-governing implementation. The analysis also extends to similar political initiatives of the European Commission.
The impact of the recent hospital reforms on the health care received by patients or on the work of health care providers in the field of rare diseases cannot be assessed conclusively at this point (January 2017). One positive feature is that the health care coverage mandate of the university hospital outpatient departments now also comprises rare diseases.
Recent legislative measures have created possibilities to improve the economic position of centers for rare diseases and university hospital outpatient departments. What these improvements will look like specifically depends on the implementation within the hospital plans of the federal states as well as on the outcome of the remuneration negotiations between university hospitals and health insurance funds.
2010年全国罕见病患者行动联盟（NAMSE）的成立标志着一个重要政治平台的创建。此外，近年来德国和欧盟采取了旨在改善罕见病患者医疗保健的具体立法措施。
在本文中，我们将概述2013年至2016年期间通过的立法改革，并评估罕见病患者的具体医疗状况是如何得到改善的。
本文分析了德国下议院联邦议院第18届任期（自2013年起）期间通过的医疗保健立法改革及其自治实施情况。分析还扩展到欧盟委员会的类似政治举措。
目前（2017年1月）尚无法最终评估近期医院改革对患者所接受医疗保健或罕见病领域医疗服务提供者工作的影响。一个积极的方面是，大学医院门诊部的医疗保健覆盖任务现在也包括罕见病。
近期的立法措施为改善罕见病中心和大学医院门诊部的经济状况创造了可能性。这些改善具体会是什么样子取决于联邦州医院计划中的实施情况以及大学医院与健康保险基金之间薪酬谈判的结果。
