Background: 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.
Objective: 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.
Materials and methods used: 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.
Results: 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.
Discussion: 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.
Keywords: European reference centers; Hospital reform; National Action League; Rare diseases; University hospitals.