Eurordis - Rare Disease Europe

EUCERD issues five distinct sets of Recommendations during its three-year mandate

The eighth meeting of the European Union Committee of Experts on Rare Diseases (EUCERD) held on 5-6 June 2013 marked the end of the EUCERD’s three-year mandate. During this final meeting, the committee adopted a set of EUCERD Recommendations on Core Indicators for National Plans/Strategies for Rare Diseases, which includes 21 specific indicators for the rare disease national plans/strategies that the Council Recommendation on an action in the field of rare diseases urges each Member State to establish by the end of 2013. Although not binding or opposable, these indicators are an important step in order to consolidate the process of development and monitoring the adoption and implementation of national plans in EU Member States. The recommendations provide information to both the Member States and the European Commission on specific national plan elements.

The EUCERD is charged with aiding the European Commission with the preparation and implementation of Community activities in the field of rare diseases, in cooperation and consultation with specialised bodies in the EU Member States, relevant European authorities in the fields of research and public health action, and other relevant stakeholders acting in the field – including patient organisations.

Established in 2009, the EUCERD elaborated and adopted five distinct sets of Recommendations during its mandate:

• Quality Criteria for Centres of Expertise for Rare Diseases in Member States
• European Reference Networks for Rare Diseases
• Rare disease patient registration and data collection
• Improving Informed Decisions Based on the Clinical Added Value of Orphan Medicinal Products (CAVOMP) Information Flow
• Core indicators for rare disease national plans and strategies
   

EURORDIS, by virtue of its highly qualified and committed patient representatives in the committee and support staff, together with its relevant internal working groups, and all members at large, takes pride in supporting the drafting and adoption process of each of these five important EUCERD Recommendations, and is proud of the work performed collectively by this innovative multi-stakeholder EU Committee dedicated to Rare Disease actions.

Other significant EUCERD achievements include the elaboration, in collaboration with national stakeholders, of an annual report on the State of the Art of Rare Disease Activities in Europe, which captures the activities and initiatives taking place at both European and Member State levels – including the activities of the European Medicines Agency, the European Commission, the Member States, and other European countries.

Members of the EUCERD also participated in a number of expert workshops dedicated to specific topics, such as national rare disease plans/strategies, international nomenclatures, specialised social services, quality of care, registries, and more. During the final EUCERD meeting, John Ryan, Director of Public Health at the Directorate-General for Health and Consumers, thanked the EUCERD Chair and members, acknowledging the added-value the EUCERD has brought to the rare disease field in Europe and beyond. A new committee, which will include four patient organisation representatives, will be established to continue supporting European policy development in the field of rare diseases. 

Louise Taylor, Communications and Development Writer, EURORDIS