EUCERD Joint Action kick-off meeting reviews the work plan designed to help implement the Council Recommendation on an action in the field of rare diseases
The kick-off meeting for the European Union Committee of Experts on Rare Diseases (EUCERD) Joint Action took place on 12-13 March 2012 in Paris. The meeting began with a networking lunch for participants, comprised of all Work Package leaders and supporting staff as well as Jarek Waligora from the European Commission (EC), who gave the Welcome address and discussed the expectations from the perspective of the EC. Also in attendance was Georgios Margetidis from the Executive Agency for Health and Consumers (EAHC) who led discussions on EC Management, financial and activity reporting, requirements and timelines, coordinator and partner responsibilities and practical aspects of reporting updates. The meeting included a review of the communication and dissemination tools, including the revamped EUCERD website, to be unveiled shortly, the OrphaNews newsletter, and various outreach efforts. The rest of the meeting was largely devoted to presentation and discussion of the other EUCERD Joint Action Work Packages:
Domenica Taruscio (Istituto Superiore di Sanità, Italy) presented the actions planned to support the implementation of plans or strategies at Member State (MS) level (continuation of EUROPLAN). This will provide technical and capacity building support for developing and implementing national plans or strategies in the EU MS as well as the EFTA/EEA and non-EU countries. Isabel Peña-Rey (Ministry of Health, Social Policy and Equality, Spain) presented the actions to develop in order to map national initiatives addressing the quality of care in the field of RD in order to identify and share successful strategies and good practices.
Kate Bushby (University of Newcastle, UK) and Thomas Wagner (Johan Wolfgang Goethe Universität, Germany) will be responsible for ensuring integration of the RD initiatives across disease specific and national areas. They seek to integrate the different strands of work of the Joint Action, together with other activities of EUCERD, in order to support the implementation of the EU Commission Communication on rare diseases: Europe's challenges and Council Recommendation on an Action in the Field of Rare Diseases .
Ségolène Aymé (Inserm, France) presented foreseeing steps to contribute to the standardisation of rare diseases nomenclature at international level, focusing on efforts around Classification and Coding.
Yann Le Cam (Eurordis) and Dorica Dan (Eurordis) presented their views about how to promote Specialised Social Services for RD and integrate them into Social Policies and Services.
Glória Isidro (Instituto Nacional de Saude Doutor Ricardo Jorge, Portugal) is in charge of the evaluation of the EUCERD activities, to verify if the project is being implemented as planned and reaches the identified objectives.
The meeting concluded with the finalisation and agreement on the work plan and outcomes of the EUCERD Joint Action as well as a discussion on linking in other EUCERD activities. The next meeting of the Joint Action, to be held in a year, will measure the progresses and discuss plans to move forward.