Rare diseases in Switzerland and the national policy

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:

  1. Facilitating access to diagnosis and cost coverage
  2. Facilitating access to therapies and cost coverage
  3. Supporting patients and providing resources
  4. Promoting Swiss involvement in (international) research
  5. Providing socio-professional and administrative support
  6. Carrying out clinical documentation and training
  7. Engaging in international networking
  8. 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 centres for rare diseases in May 2020, 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 recognised four centres of reference for rare metabolic disorders and six centres of reference for rare neuromuscular diseases. The relevant kosek reports on its activities and on the recognition procedure are available here.

On the basis of findings and expertise obtained from previous recognition processes, kosek is planning the recognition of other centres of reference with care networks. kosek’s criteria are aligned with those of the European reference networks and of Orphanet.

Involvement of partner 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 the care and treatment of 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.

Further information

Rare diseases

Although rare diseases may be individually rare, they are collectively common. In Switzerland, over half a million people are affected by a rare disease.

Useful information for patients and their families

Not only are the individual diseases rare, but there is little specialist knowledge about them. In order to improve care, efforts are now being made to pool expertise and share information more effectively.

Last modification 03.11.2023

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