Committee of Experts of the European Union (EUCERD)

As a EUCERD member, Dorica Dan participated in the fourth meeting of the Committee of Experts of the European Union (EUCERD) held on 26-27 January 2012 in Luxembourg. Plenary meeting was preceded by preparatory meetings organized by working groups and led to extensive discussion on two main issues for discussion, clinical added value of orphan drugs (CAVOD) and European Reference Networks (ERN). Patient group had a meeting with EUCERD office to present the priorities of patient organizations in general actions of EUCERD. EUCERD began making recommendations on European Reference Networks (ERN) to serve the development of ERN criteria. A workshop on this topic will take place on June 19, 2012, before the next meeting of EUCERD. The adoption of these recommendations is planned for the sixth meeting of EUCERD in November 2012. Member States were urged to work on appointing centers of expertise at national level, using "EUCERD recommendations on quality criteria for Centres of Expertise for Rare Diseases in Member States", adopted in October 2011, so this should be done before setting ERN. In the EUCERD meeting were also presented the results on new newborn screening practices in the European Union. A workshop on newborn screening, with the participation of the EU Network of experts is planned for the first quarter of 2013. European Partnership for Action Against Cancer (EPAAC) was presented to EUCERD and a debate on synergies between this initiative and action on rare diseases was started. EUCERD representatives of the Member States were asked to report on progress made in their country to develop a national plan or strategy for rare diseases as determined by the Council Recommendation on an action in the field of rare diseases for 2013. Development or implementation of such plans or strategies seems to be gaining momentum, representatives of the Member States were asked to identify the person responsible for developing and implementing their national plan / strategy for the establishment of a networking project Europlan 2. It was announced the EJA launch for March 12 to 13 in Paris and presented the collection of information for the report "State of the Art of Rare Diseases in Europe". A program was presented to the European Conference of rare diseases and orphan drugs to be held in Brussels in May and the main actions planned for the International Day of Rare Diseases 2012.
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Thursday, January 26, 2012