EUHA – Rare Diseases & ERN Network Meeting

The EUHA – Rare Diseases & ERN Network had its F2F meeting at the Karolinska University Hospital in June 12 – 13th. The network’s strategic topics were discussed with focus on current collaborations with patient organisations where Rare Diseases Sweden presented part of their current activities.

Pediatric to adult transition healthcare was also one of the main points on the agenda in Stockholm and action plans were made and have already been initiated. The network also had the opportunity to meet with the Swedish representatives at the Board of Member States, the Swedish Board of Health and Welfare, and the JARDIN EU project for implementation of ERNs in national healthcare systems was presented.

As the last session, a discussion and exchange of experiences were carried out regarding the ERN 5-years evaluation process and from the point of view of the participating EUHA hospitals.  

– It was a great pleasure to host this meeting and to engage together with the EUHA colleagues in fruitful discussions. There is a tremendous value of in-person workshops, as complement to digital meetings, when complex topics, such as transition healthcare, RD coding and ERNs, are discussed and consensus needs to be reached to identify well-defined goals, move forward, and deliver concrete long-term changes, Says, Rula Zain, Coordinator of the EUHA – Rare Diseases & ERN Network at the Center for Rare Diseases, Karolinska.