May 2018 spectra 120 - Rare diseases

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Federal government commitment to people with rare diseases

Rare diseases. In Switzerland some 500 000 people suffer from a rare disease. Between 7 000 and 8 000 such diseases exist. There are so many of them that they account for a quarter of illnesses worldwide and are thus as frequent as one of the most widespread diseases. How- ever, the lower the number of people suffering from a particular disease, the less we know about its causes, symptoms and treatment options. more


At first hand

When the talk is of "rare diseases", we do not usually feel directly addressed: anything "rare" just affects others. But it is only the individual diseases that are rare. As a group, they are as common as diabetes. I too realised this only when we began drafting the National Rare Disease Policy. more


When does the statutory health insurance (SHI) cover the costs, when does it not?

Genetic testing. Many rare diseases are of genetic origin, i.e. they can be inherited. Changes in an individual’s genetic make-up can now be demonstrated in the blood. Genetic analyses have to be accompanied by genetic counselling. However, the statutory health insurance (SHI) does not cover the often considerable cost of genetic testing in all cases. more


National policy – participation in international networks

International. In order to remain involved internationally in research, diagnosis, treatment and management of rare diseases, Swiss centres of excellence rely on international partnerships. A new "International Networking" subproject in the context of the National Rare Disease Policy has been developed to help provide Swiss centres an anchor for their international integration. more