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Erasmus MC to host meeting European network rare diseases

Erasmus MC and European Commission DG Health and Food Safety in cooperation with the Netherlands Ministry of Health, Welfare and Sport organize a high level meeting on 17 November to shape the future of European Reference Networks for rare diseases.

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 in Rotterdam.

European Reference Networks (ERNs) are unique and innovative cross-border cooperation platforms between specialists for the diagnosis and treatment of rare, low prevalence and complex diseases. These networks bring together healthcare providers across Europe to tackle complex or rare medical conditions that require highly specialized treatment and a concentration of knowledge and resources.


Highly specialized
24 thematic ERNs, gathering over 900 highly specialized healthcare units of over 300 Hospitals from 26 countries, work together on a wide range of issues, from bone disorders to hematological diseases, from pediatric 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 specialized healthcare in medical domains where the expertise is rare. Erasmus MC doctors coordinate 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 on 17 November. 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 ERNs. 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 analyze key issues, challenges and opportunities of the ERNs in relation with the hospital management and support to the ERNs.

For further information, see the press release.

Date published: 16 November 2017.

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