Shared knowledge in important EU-meeting for rare diseases


Together with colleagues from many of the most prominent hospitals in Europe, Björn Zoëga, CEO at Karolinska University Hospital, participated in the Hospital Managers meeting, arranged by the European Commission and the European Reference Networks (ERNs) on rare diseases. The two-day meeting, 21-22nd October, focused on bridging the gaps and creating opportunities for collaboration in Europe.

More than 7 000 rare diseases are known today, affecting approximately 30 million patients in Europe. Multidisciplinary medical teams collaborate across Europe in a set of 24 different ERNs to tackle rare diseases and conditions that require highly specialized treatment and concentrated knowledge. Karolinska has a leading position in Europe, being a member of 18 out of 24 ERNs.

- Karolinska has world leading expertise in many medical fields, and we are proud to share knowledge and collaborate with top medical colleagues in Europe. Together we create a sustainable platform to cure and relieve patients suffering from rare diseases, says Björn Zoëga, CEO, Karolinska University Hospital.

Rula Zain, Associate professor, Center for Rare Disease at Karolinska University Hospital, and Swedish ERN national coordinator, has arranged a break-out session in the EU-meeting in collaboration with EUHA and European Children’s Hospitals Organisation (ECHO).

- One of our most important challenges within the ERNs is to ensure the care continuity: the transition from childhood to adulthood. Our aim is to be able to deliver the best possible healthcare during the whole life of each patient, says Rula Zain.

Another key topic for the meeting was to discuss the development of the ERN Clinical Patient Management System (CPMS) in the context of digitalization and data management, one of the areas where Karolinska University Hospital is ranked as number one in Europe according to Newsweek.


  • The ERN Hospital Managers’ community includes the CEOs or Directors of the more than 300 hospitals where one or several member(s) of the 24 ERNs are located. Currently 26 EU Member States plus Norway are participating in the ERNs.
  • The ERNs aim to tackle complex or rare diseases and conditions that require highly specialized treatment and concentrated knowledge and resources.
  • Karolinska University Hospital is a member of 18 out of 24 ERNs.
  • Karolinska University Hospital is ranked as the world's seventh best hospital, according to Newsweek magazine, and as Europe's best hospital in smart technology and data management.
  • Karolinska University Hospital is a partner of the European University Hospital Alliance (EUHA), which was formed in 2017 with the commitment of nine of the best university hospitals in Europe to share their expertise in health care, research and education.
  • Participants from Karolinska University Hospital:

Björn Zoëga, CEO at Karolinska University Hospital

Rula Zain, Associate professor, ERN national coordinator at Karolinska University Hospital

Anna Sahlström, Head of National and International affairs at Karolinska University Hospital

Wiktor Wackerberg, Business developer at Karolinska University Hospital

Katja Ekholm, Centre for Rare Diseases Karolinska University Hospital

Patrik Georgii-Hemming, CMIO at Karolinska University Hospital