Erasmus MC hosts ERN rare diseases workshop

Erasmus University Medical Center Rotterdam to host European Reference Networks for rare diseases workshop

Erasmus MC and European Commission DG Health and Food Safety in cooperation with the Netherlands Ministry of Health, Welfare and Sport organise a high level meeting to shape the future of European Reference Networks for rare diseases

On November 17th, Erasmus MC will host a workshop on the role of hospital managers in the European Reference Networks. Over seventy attendants will be part of this shaping and agenda setting workshop.

European Reference Networks (ERNs) are unique and innovative cross-border cooperation platforms between specialists for the diagnosis and treatment of rare or low prevalence complex diseases. These networks bring together healthcare providers across Europe to tackle complex or rare medical conditions that require highly specialised treatment and a concentration of knowledge and resources. They are being set up under the EU Directive on Patients' Rights in Healthcare (2011/24/EU), which also makes it easier for patients to access information on healthcare and thus increase their treatment options.


24 thematic ERNs, gathering over 900 highly specialised healthcare units from 26 countries, work together on a wide range of issues, from bone disorders to haematological diseases, from paediatric cancer to immunodeficiency. Joining up of EU's best expertise on this scale should benefit every year thousands of patients with diseases requiring a particular concentration of highly specialised healthcare in medical domains where the expertise is rare. Erasmus MC doctors lead two of the 24 European Reference Networks.

Hospital managers involved in ERNs, a representation of the ERN Board, patient advocates, and ERN coordinators from various European countries, will attend the workshop. Hospital managers are key players in the success of the ERNs and its members.

The overall goal of the workshop would be to establish a trust relation between all involved players for the better effectiveness and sustainability of the ERNhs. The main aim is to create a discussion and reflection space to exchange views of the main players involved in the ERNs implementation and to analyse key issues, challenges and opportunities of the ERNs in relation with the hospital management and support to the ERNs. The hospital environment and how ERNs members' work and activities are integrated in the organisation and working procedures of each hospital is the backbone of the ERN system.