Today, 6000 to 8000 rare diseases are known worldwide. A disease is classified as rare if it affects no more than 5 in 10,000 people. Because these conditions are so rare, it is often difficult to ensure that they are detected at an early stage and appropriately treated. The SAMS supports efforts to provide better care for the roughly 500,000 people with rare diseases in Switzerland.
The aim of the National Rare Disease Policy, adopted by the Federal Council in 2014, is to improve the situation for patients, particularly by providing networked care and establishing reference centres. A strategy of this kind also makes receiving professional support possible for patients, relatives, and professionals, and enables pooling the expertise.
On request of the Federal Office of Public Health, the SAMS prepared a report published in 2016 recommending a national coordination body for rare diseases. The body was established under the name of «kosek» in 2017. The efforts of kosek are focused on the development of resources to facilitate the diagnosis of rare diseases and fill existing gaps. As a coordination body, it carries out projects in collaboration with health system actors, engaging with the people concerned through patient organisations. The SAMS is a founding member of kosek.
Visit the kosek website in German, in French or in Italian
The 2016 report defined also the procedure for the designation of reference centres. Based on this report, the kosek defined the criteria and recognition process. Since 2020, it has recognized centers for rare diseases (in German or in French) that are not specific to a particular disease and reference centers (in German or in French) for specific groups of diseases. The aim is to ensure high-quality care throughout Switzerland.
New federal law on rare diseases
In 2025, the SAMW supported the kosek's position on the new federal law on measures to combat rare diseases. Like kosek, the SAMS sees this long-awaited new legal basis as an important step towards improving the care and quality of life of some 500,000 people affected in our country. However, it regrets that measures to address gaps in care have been excluded from the law: on the one hand, the reimbursement of costs incurred by individuals and institutions subject to the obligation to report rare diseases and, on the other hand, coordination costs at the level of hospitals and networks.