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Germany adopts rare disease strategy after a participative 3-year process

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Germany has joined the growing list of European Union Member State countries to adopt a dedicated strategy for rare diseases. The German plan, Measures to Improve the Health Situation of Persons with Rare Diseases in Germany, contains 52 distinct proposals for action. Nationally recognised centres of excellence for diseases or groups of diseases that collaborate nationally and internationally are a cornerstone of the German plan in order to provide patients with the best, targeted care available. Providing current, validated information for professionals and patients, improving diagnostics, and supporting research are other key features of the German plan.

In 2009, the European Council Recommendation on an action in the field of rare diseases called upon all European Union Member States to define and implement a strategy to improve the situation of their citizens living with a rare disease by the end of 2013. In response, in March 2010, the German Federal Ministry of Health, along with the Federal Ministry of Education and Research, and the German Alliance of Chronic Rare Diseases (ACHSE) founded the National Action Coalition for Persons with Rare Diseases (NAMSE) with the explicit aim of developing a national rare disease plan.

ACHSE is an active member of the EURORDIS Council of National Alliances and was a key advisor in the EUROPLAN-EURORDIS Advisors team on National Plans. Germany is one of the most inspiring Member States in the EUCERD with its bottom up and multi-stakeholder methodology to developing a national plan.

In a press release, ACHSE Chairman Christoph Nachtigäller, commented that “ACHSE, representing the voice of people living with a rare disease, welcomes the capacity of the National Action Plan to bring into focus the concerns of patients by identifying need-based solutions. People affected by a rare disease have much expertise to offer, driven by their need to collect information and practical knowledge and create networks, including across borders. This expertise has become part of the national plan”.

Some 28 different partners have been involved in the three-year process to develop the German plan and are committed to the process of implementing the measures. There are an estimated four million people living with a rare disease in Germany.

Louise Taylor, Communications and Development Writer, EURORDIS
Page created: 01/10/2013
Page last updated: 02/10/2013