European Reference Networks: developing a EUCERD opinion

EUROPEAN COMMISSION DIRECTORATE-GENERAL FOR HEALTH AND FOOD SAFETY Public Health RARE DISEASE EUROPEAN REFERENCE NETWORKS: ADDENDUM TO EUCERD RECOMMENDATIONS OF JANUARY

The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community

The European Union Committee of Experts on Rare Diseases was entrusted with aiding the European Commission in a number of tasks, ranging from the monitoring of initiatives, to recommending improvements and actions to be pursued in the future, in addition to helping strengthen liaison at both European and International levels in the field of rare diseases. The three-year mandate of the EUCERD dr...

The context for the thematic grouping of rare diseases to facilitate the establishment of European Reference Networks

BACKGROUND In the past few years there has been a political imperative driving the creation of European Reference Networks as these are considered a promising way to achieve equity in access to the most up to date medical care across Europe. The right to equity in the access to care was established by the directive of the European Parliament and of the Council on the application of patients' ri...

The European Union Committee of Experts on Rare Diseases (EUCERD): a new committee to help the European Commission advance in the field of rare disease policy

The European Union Committee of Experts on Rare Diseases was formally established via the European Commission decision of 30 November 2009 (2009/ 872/EC). The EUCERD will aid the European Commission (EC) with the preparation and implementation of Community activities in the field of rare diseases, in cooperation and consultation with the specialised bodies in Member States, the relevant Europea...

State of the art of rare disease activities in Europe: a EUCERD perspective

Two years ago, at the ECRD in Krakow, we were celebrating the recommendation of the Council of Ministers on an action in the field of rare diseases: this recommendation requests that Member States define and implement a plan or a strategy for rare diseases by the end of 2013 and asks the European Commission to establish a EU Committee of Experts in the field of Rare Diseases (EUCERD) as a forum...