Creation of a national coordination for rare diseases in Switzerland
There are approximately 500,000 people living with a rare disease in Switzerland. At present, the management of rare diseases is not always satisfactory in this country.
On June 22, the main Swiss healthcare organisations founded a joint body for rare diseases in Bern: the National Coordination of Rare Diseases (kosek). The founding members are ProRaris, the Swiss Rare Diseases Alliance, the Swiss Conference of Cantonal Directors of Health (CDS), the Swiss Academy of Medical Sciences (ASSM), the Swiss University Medicine Association unimedsuisse, Swiss Pediatric Hospitals AllKids and a group of non-university hospitals and clinics. Kosek's mission is to improve the care of people with rare diseases in Switzerland and promote connections so as to advance research and development at the international level.
Kosek will work at sharing the existing knowledge on rare diseases and will enable the creation of reference centres networks, international collaboration for research, and the development of diagnostic testing for rare diseases, through a global and multi-stakeholder approach.
Nevertheless, Swiss centres for rare diseases cannot currently apply to be included in the European Reference Networks for rare diseases (ERN), which were launched in March 2017 (see the edition of OrphaNews of 23 March 2017). Being included in ERNs will allow Swiss centres to have more research opportunities. In December 2017 a call might be issued, and new centres for rare diseases fulfilling all the requirements for inclusion in ERNs will be able to join the existing networks in their thematic area.
Consequently, the Swiss Rare Diseases Alliance ProRaris has launched a call to draw the attention of the Swiss authorities to this problem. The petition calls on Swiss authorities to do the outmost to assure the participation of the Swiss centres of rare diseases in the ERN of their thematic area.
