The EUCERD Joint Action: Working for Rare Diseases was originally established to support the activities of the European Union Committee of Experts on Rare Diseases (EUCERD). The project therefore supports the European Commission in formulating and implementing the European Union's activities in the rare disease field, by facilitating the exchange of policies and practices between all stakeholders and Member States. The project is active across many diverse areas of the field, and is expected to deliver numerous important outcomes: accelerated support for the development and implementation of national plans and strategies for rare diseases: the comprehensive coding and classification of rare diseases, to ensure visibility of these conditions in healthcare systems and to produce a greater quantity of interoperable data: a demonstration of the importance of developing specialised social services for people living with rare diseases (beyond the purely medical sphere); means of improving access to higher quality healthcare for rare disease patients, regardless of where they live in the EU; and the development of a model for the integration and sustainability of rare disease initiatives and infrastructures. The 'mini-projects' within the overall Joint Action will produce shared tools and resources for the benefit of the whole rare disease community, and will also define and publicize the state of the art in terms of rare disease activities in Europe.
Professor Kate Bushby