Projects and measures under the National Rare Disease Policy

In its 2014 National Rare Disease Policy the Federal Council set down 19 measures designed to achieve seven goals. A sub-project concerned with international networking has been added to the original implementation plan. The FOPH is overseeing those measures whose implementation is not yet complete, and will continue to do so until the end of 2022.

Five projects implementing national policy

The National Rare Disease Policy contains 19 measures. The FOPH has broken down their implementation into five projects. One pivotal measure is the designation of specialised care delivery structures. The aim is to guarantee patients access to proper treatment throughout the course of the disease. This also covers the transition from paediatric to adult medicine.

Project 1: Centres / disease-(group-)specific reference centres / care networks / 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. To this end, specialised care structures are to be designated, the requisite data gathered and processed, and specialist information provided.

In Mai 2020 the National Coordination for Rare Diseases (kosek) announced the recognition of six centres for rare diseases and another three in May 2021. With a total of nine centres for rare diseases, Switzerland now has nationwide coverage.

In November 2021, kosek also recognized four centers of reference for rare metabolic diseases and six centers of reference for rare neuromuscular diseases. The relevant reports by kosek on its activities and procedures are posted here (in German).

Since spring 2022, the Swiss Rare Disease Registry (SRDR) has its own website. On the website, patients, specialists and researchers will find detailed information about the SRDR and all the necessary documents for registration.

Project 2: Funding the costs

Project 2 concerns the reimbursement of the costs for medical care, and the list of birth defects and congenital disorders. The idea is to give patients more clarity about the cover provided by health insurers for medical care, and to ensure a smooth transition from paediatric to adult medicine, more specifically from disability to regular health insurance.

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

This project revolves around information. Besides medical information, people suffering from rare diseases, their families and the professionals involved also need guidance and orientation on legal, administrative, social, educational and job/career-related matters. Ensuring optimum care means there must be specific, easily accessible information offerings and guidance. Advice and self-help are powerful complements to the existing resources. The systematic involvement of patient organisations improves the information on offer and helps those affected to be more open to research projects and registers.
In 2019 the FOPH commissioned a study with a view to providing better information. The aim was to assign typical questions from people affected by rare diseases in five selected cantons (Zurich, Glarus, Neuchâtel, Vaud and Ticino) to the existing advisory services and agencies (see the snapshot of advisory services for people with rare disease in “Bestandesaufnahme von Beratungsangeboten für Menschen mit seltenen Krankheiten”, October 2019). The ultimate aim is to get an overview of the whole of Switzerland.

Project 4: Training and research

The goal of Project 4 is to improve training and knowledge transfer among health professionals via universities and specialised care 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. Specialist care structures also facilitate research, extending knowledge of rare diseases and helping to optimise diagnosis, treatment and care.

Project 5: International networking

This sub-project, launched in 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.

News (in German, French and Italian)

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 03.03.2023

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