European Union Committee of Experts on Rare Diseases
The EUCERD aids the European Commission to prepare and implement Community activities in the field of rare diseases.
EURORDIS Patient representatives appointed to the EUCERD
The European Commission established in November 2009 via Decision 2009/872/EC the European Union Committee of experts on rare diseases (EUCERD), replacing the Rare Disease Task Force (2004-2009). The EUCERD is composed of representatives from the European Commission’s Directorate General for Health and Consumers (DG Sanco), Directorate General for Research (DG Research), Directorate General for Enterprise (DG Enterprise), the Committee for Orphan Medicinal Products and the European Medicines Agency, and the European Centre for Disease Control, together with one Member State representative from the ministries or government agencies responsible for rare diseases, 4 representatives of patient organisations, 4 representatives of industry, and 15 representatives of academia, selected from a variety of areas of expertise. EURORDIS founder and Chief Executive Officer Yann Le Cam was appointed Vice Chair of the EUCERD in 2011.
The preparation and implementation of EU activities in rare diseases require close cooperation between the specialised bodies in Member States and all relevant stakeholders. The EUCERD provides policy guidance for the effective implementation of (a) the Commission Communication on Rare Diseases: Europe's challenges (adopted in November 2008) - through promotion, monitoring, evaluation, opinions, recommendations, reports, including at its own initiative - and (b) the Council Recommendation on an action in the field of rare diseases (adopted in June 2009) towards developing and implementing national strategies and plans on rare diseases in all Members States by the end of 2013.
Collaterally, the EUCERD advises the Commission on rare diseases for the Eighth EU Research Framework Programme and the third EU Public Health Programme, both covering the period 2014-2020 – the period 2010-2012 was crucial in this regard. The Committee is a source of expertise for drafting guidelines and recommendations for the future policy on European Reference Networks of Centres of Expertise, patient mobility, registries, as well as rare diseases (newborn screening, gene testing and counselling). The EUCERD also assists the Commission in international cooperation on matters relating to rare diseases, enabling Europe to speak with a clearer, more consistent and stronger voice on the international scene. The EUCERD is a unique three-dimensional committee:
Multi-stakeholder, it provides an opportunity to enhance the partnership between all rare disease stakeholders - patient representatives, academic experts, industry, national and European decision makers - which is one of the key success factors validated in our common journey to promote and shape rare disease policies.
Comprehensive, it provides the opportunity to discuss, promote and guide EU policy in all main fields of action relevant for rare diseases such as: research, drug development, information, public health.
Integrative, it provides the relevant forum to articulate EU policy between the Commission and all Member States and between the MS, while rare diseases have been recognised for their exceptionally high Community added value.
As the challenges raised by rare diseases in Europe have already been identified, there are clear policy orientations for the years to come. The mandate of the EUCERD finished in June 2013. During the mandate of the EUCERD, five sets of Recommendations were elaborated and adopted:
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, has taken 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.
In July 2013, the EUCERD was replaced by the European Commission Expert Group on Rare Diseases, which includes four rare disease patient organisations, to continue supporting European policy development in the field of rare diseases.
*Deceased, February 2012