Exploring the usability of EUCERD core indicators for rare diseases.

EUCERD REPORT HEALTH INDICATORS FOR RARE DISEASES II – Conceptual framework for the use of health indicators for monitoring quality of care

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...

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...

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...

European Reference Networks: developing a EUCERD opinion

The establishment of European Reference Networks as laid out under the Cross Border Health Care Directive (CBHCD) is a major opportunity for the rare disease community. There have been many successful networks for rare disease groups, but their establishment has been ad hoc and funding streams variable. Sustainability has been a major challenge. Although the assessment of the quality of these n...