A series of practical measures was implemented between 2014 and 2019 as part of the National Rare Disease Policy with the aim of improving care for people living with rare diseases throughout the course of their illness.
The goals of the National Rare Disease Policy
The National Rare Disease Policy provided the impetus for action in the area of rare diseases. The goals of the policy were and still are:
- Facilitating access to diagnosis and cost coverage
- Facilitating access to therapies and cost coverage
- Supporting patients and providing resources
- Promoting Swiss involvement in (international) research
- Providing socio-professional and administrative support
- Carrying out clinical documentation and training
- Engaging in international networking
- Gearing the rare disease policy to the long term
The implementation of the National Rare Disease Policy concluded in late February 2019. However, the Federal Office of Public Health (FOPH) and the other stakeholders continue to implement some measures that were not implemented in full:
Establishing and recognising specialised care delivery structures
The national coordination body for rare diseases in Switzerland (kosek) announced the recognition of the first six cross-diagnosis centres for rare diseases (ZSKs) in May 2020, and another three in May 2021. With a total of nine centres for rare diseases, Switzerland now has nationwide coverage. The centres for rare diseases act as interdisciplinary contact points where people with symptoms but who are undiagnosed can go for in-depth assessment and final diagnosis. In November 2021, kosek recognised four centres of reference for rare metabolic disorders and seven centres of reference for rare neuromuscular diseases for the first time.
In December 2024, kosek recognised a further 25 specialised treatment centres in Switzerland as centres of reference. Spread over the whole of Switzerland there are now centres of reference for the treatment of rare kidney diseases, rare bone diseases and rare connective tissue diseases, rare immunological diseases and inflammatory connective tissue diseases, as well as rare sleep disorders. The centres of reference, associated treatment centres and patient organisations are all affiliated to a national network and work together to improve care for patients suffering from these conditions. In order to guarantee high quality of care for those affected by rare diseases throughout Switzerland, kosek will recognise additional centres of reference in other groups of diseases in the coming years and therefore complete the care available to those affected. You will find more information on recognition here.
Involvement of patient organisations
Patients and their relatives rely on easily accessible information and support. Advice and self-help reinforce the existing resources. The systematic inclusion of patient perspectives in all projects improves the information and care available and helps those affected to be more open to research projects and registers.
Development of the Swiss Rare Diseases Registry
The overarching aim of the Swiss Rare Diseases Registry (SRDR) is to improve care and treatment for people living with rare diseases in Switzerland. A better understanding of the epidemiology ultimately also allows diagnostic methods and therapies to be optimised. The website provides patients, professionals and researchers with information on the SRDR and all the necessary documents to register.
Development of Orphanet in Switzerland
The Orphanet reference portal compiles information on rare diseases and orphan drugs, but also on expert centres, labs providing diagnostic tests, research and clinical trials, patient organisations and finally on professionals and institutions. Orphanet has a web portal on rare diseases and orphan drugs called ‘orpha.net’ that is aimed at both professionals and those affected.
‘Orphanet Switzerland’ operates the Swiss homepage and works with kosek and the Swiss Rare Disease Registry.
Current priorities
Current priorities that remain a focus after expiry of the policy are:
- establishing and recognising specialised care delivery structures by kosek,
- continuing to develop and operate the Swiss Rare Disease Registry and
- continuing the work of the umbrella organisation for patients, ProRaris.
Adapting the list of congenital disorders
It has been possible to amend the list of congenital disorders since 1 January 2022 if needed. It is possible to submit requests to include a new congenital disorder or to adapt an existing one.
Last modification 05.03.2025
Contact
Federal Office of Public Health FOPH
Health and Accident Insurance Directorate
Tariffs and Principles Division
Schwarzenburgstrasse 157
3003
Bern
Switzerland
Tel.
+41 58 462 37 23