In February 2026, kosek – the National Coordination for Rare Diseases – officially recognized a total of 42 reference centres across seven networks, including the Swiss VASC-RN for rare multisystemic vascular diseases. This is good news for the more than half a million people in Switzerland living with a rare disease.
The recognition requires centres to work in an interdisciplinary manner, meaning specialists from different fields collaborate closely (kosek press release, 25.03.2026).1 This is right and important. However, recognition alone is only the beginning.
Networking as the real challenge
For ultra-rare diseases, having a recognised centre nearby is not enough. Medical expertise is built not only on knowledge, but on repeated practice: physicians who see similar cases more often develop clinical judgement that cannot be learned from textbooks. With only a few cases per million inhabitants, this is only possible if patients are deliberately concentrated rather than spread across many locations. A network only works if it shares not just information, but also resources and cases.
The strength of the kosek model therefore lies in its network approach: reference centres, associated centres and patient organisations are expected to coordinate, discuss cases and develop standards of care together. Whether this ambition will be realised in practice remains to be seen.
International integration is equally important – particularly within the European Reference Networks (ERN), where specialists across Europe pool their expertise. Switzerland is not automatically included, but can participate as an associate. This opportunity should be actively used.
Conclusion
The foundation has been laid. The next step is to turn a list of recognised centres into a truly functioning network – both nationally and internationally.
Further links
1 kosek – New reference centres for rare diseases recognised, press release 25.03.2026.
https://www.kosekschweiz.ch/ueber-kosek/medien/neue-referenzzentren-fuer-seltene-krankheiten-anerkannt