National Rare Disease Policy: stakeholders involved

Only joint efforts lead to improvement

Cantons as guarantors of care

The cantons are responsible for assuring the provision of healthcare and for supervising hospitals, homes (long term care facilities) and outpatient care providers. The cantons and their joint organisation, the Swiss Conference of Cantonal Ministers of Public Health (GDK), are therefore key partners in efforts to implement the National Rare Disease Policy.

Concentration makes sense

Nobody can be a master of all trades. This is particularly true when it comes to rare diseases. It is impossible to know all 7,000 or so rare diseases and immediately make the right diagnosis on the basis of unclear symptoms. So it is all the more important to bundle the skills and knowledge of those with expertise in each individual rare disease.
There needs to be even greater awareness of the special issues involved in providing care to patients with a rare disease, and expertise must be bundled. For this reason, care providers are involved in implementing the National Rare Disease Policy. On 22 June 2017, the Swiss Conference of the Cantonal Ministers of Public Health (GDK), the Swiss Academy of Medical Sciences (SAMS), unimedsuisse (the Swiss Association of University Medicine), the AllKidS alliance of Swiss children’s hospitals, a group of non-university hospital and clinics, and ProRaris, the umbrella association for rare diseases, founded kosek, the national rare diseases coordination office. Kosek is responsible for designating specialised care delivery structures for rare diseases.

Together with patients

Patients with rare diseases are often real experts with a wealth of experience gained in the course of actively engaging with their condition, informing themselves, networking with fellow sufferers and giving mutual support. This know-how has to be harnessed properly. Organisations, particularly disease-related patient organisations and ProRaris, the umbrella association for rare diseases, play a key role in implementing the National Rare Disease Policy.

What about the federal authorities?

The National Rare Disease Policy explicitly names the Federal Office of Public Health (FOPH), the Federal Social Insurance Office (FSIO), Federal Statistical Office and the State Secretariat for Education, Research and Innovation (SERI). These departments have a legal remit in connection with rare diseases. The agencies and organisations involved coordinate implementation of the National Rare Disease Policy under the lead of the FOPH.

Last modification 09.06.2020

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