Projects and measures under the National Rare Disease Policy

In 2014, as part of its National Rare Disease Policy, the Federal Council set out 19 measures designed to achieve seven goals. Implementation of the policy has been extended until the end of 2019. A sub-project concerned with international networking has been added to the original implementation plan.

Five projects implementing national policy

The National Rare Disease Policy contains 19 measures. The FOPH has broken down their implementation into five projects. One key measure requiring particular attention is the designation of rare disease centres / disease (group)-specific reference centres and care networks. These structures are designed to guarantee patients access to proper treatment throughout the course of the disease. This also covers the transition from paediatric to adult medicine. The centres will also provide continuing training for healthcare staff.

Project 1: Centres/Care networks/disease(group)-specific reference centres, patient support, register, and coordination systems

Project 1 encompasses measures 1, 2, 6, 10 and 17 of the National Rare Disease Policy, covering the following themes: Centres/care networks/ disease (group)-specific reference centres, patient support, register, and coordination systems. The goals of the project are to maximise the speed of diagnosis, minimise difficulties stemming from the rare nature of these conditions, and provide patients with optimum care throughout the course of their disease. Among other things this involves providing disease-specific information and appointing the relevant specialists.

Project 2: Funding the costs

Project 2 covers measures 13, 14 and 15 of the National Rare Disease Policy, and concerns funding the costs of providing care to patients, the list of birth defects and congenital disorders, and the list of drugs for birth defects and congenital disorders. The idea is to give patients more clarity when it comes to the cover provided by health insurers for medical care, and to ensure a smooth transition from paediatric to adult medicine and from disability insurance to regular health insurance.

Project 3: Information, boosting available resources and involving patient organisations

This project covers measures 3, 4, 5, 9, 11, 12 and 18 of the National Rare Disease Policy. It deals with the issues of access to information and information sharing. Ensuring optimum care means there have to be information offerings for health professionals. Patients and their families also rely on easy access to information and support, and advice and self-help are a powerful complement to the resources available to them. The systematic involvement of patient organisations improves the information on offer and helps those affected to be more open to research projects and registers.

Project 4: Training and research

Project 4 covers measures 7, 8 and 16. The goal is to improve training and knowledge transfer among health professionals via universities and specialised care provision structures.
The project includes efforts made to actively promote Switzerland's involvement in international research to improve understanding of epidemiology and hone diagnostic and therapeutic methods. More in-depth knowledge of epidemiology and the progression of rare diseases will facilitate innovative approaches. There has to be international cooperation between health professionals, institutions and research. The project aims to systematically encourage researchers to submit projects as part of national and international programmes. Specialised care provision structures also facilitate research, extending knowledge of rare diseases and helping to optimise diagnosis, treatment and care.

Project 5: International networking

This sub-project, running since 1 January 2018, concerns the entire implementation of the National Rare Disease Policy. Given the rarity of individual diseases, international networking is crucial for Switzerland. This applies not only to research (e.g. basic, translational or clinical research), but to the treatment (e.g. diagnosis and therapy) of patients with rare diseases.

The goal is to highlight ways of making sure Swiss rare disease experts are involved internationally.

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Nationales Konzept Seltene Krankheiten

22.11.17 - Die Umsetzung des Nationalen Konzepts Seltene Krankheiten wird bis Ende 2019 verlängert. Bis dahin sollen gemeinsam mit den Beteiligten Massnahmen umgesetzt werden.

Last modification 15.02.2019

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