Configuring Spaces and Flows for Rare Disease in Europe

Richard Woolley
Jueves, 20 Febrero 2014 - 12:00

The organization and delivery of improved quality of care for Rare Disease (RD) patients confronts a fundamental challenge: how to make knowledge and expertise that is itself scarce available to the sufferers of RDs in a timely and accessible manner. At the European level criteria are being developed for the designation of Centres of Expertise (CEs) and the establishment of Reference Networks (ERNs) with the objective of addressing this challenge. The implicit vision of networks of CEs transcends national and regional frontiers, reconfiguring spaces of scarcity and engineering flows of knowledge and skill to re-draw the map of diagnosis, treatment and rehabilitation for RD patients. This seminar discusses the ongoing process of institutionalizing new arrangements for RD in Europe utilizing two theoretical approaches, Boschma and colleagues’ description of a ‘proximities’ framework for knowledge and innovation, and Barry’s conception of the governing of ‘technological zones’.


Ciudad Politécnica de la Innovación
Edificio 8E, Acceso J, Planta 3ª (Salón de Actos. Cubo Rojo)
Universidad Politécnica de Valencia | Camino de Vera s/n

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