This workshop was held on 31 March-1 April 2014 in Madrid, and was organised in the scope of the EUCERD Joint Action (N° 2011 22 01), funded by the EU Health Programme in the scope of WP7.
The workshop, held at the Spanish Ministry of Health, Social Services and Equality was attended by over forty experts in the field of rare diseases, representing the various stakeholder groups. It addressed a number of specific topics and questions:
– To present the final results obtained by WP7 of the EUCERD Joint Action on Quality of Care / Centers of Expertise.
– To provide a forum for Member State Representatives to discuss these results and how they might be used to improve the quality of care in Centers of Expertise (CEs) for Rare Diseases (RD).
– To explore Member States’ current plans and readiness to support the participation of Centers of Expertise for RD in European Reference Networks (ERNs).
-To identify main criteria of Quality of Care in CEs and discuss their impact in future ERNs.