EC’s implementation report on rare diseases: Europe’s challenges and council recommendations

Considerable efforts are still required to ensure all rare disease patients are adequately cared for

October 3, 2014

Since the European Commission’s Communication on Rare Diseases: Europe’s challenge of 2008 and the Council’s Recommendation on an action in the field of rare diseases of 2009, significant achievements have been accomplished and initiatives launched to improve rare disease diagnosis and care in EU Member States. Earlier this month, the Commission published its implementation report on the Commission Communication and Council Recommendation, outlining accomplishments and lessons learnt for further action. 

The Commission co-funded the EUROPLAN project and EUCERD Joint Action to help Member States develop, implement and evaluate their national plans and strategies for rare disease policy and classification. To date, sixteen Member States have proposed a national plan on rare diseases and a further seven are in the process of developing their strategy. 

Via its Seventh Framework Programme for Innovation and Technology Development (FP7), the EU has funded some 120 multidisciplinary research projects on rare diseases. Projects such as E-RARE-2 coordinate and strengthen multidisciplinary and multi-national projects. Launched in 2011, IRDiRC’s 41-member consortium illustrates the EU’s ongoing commitment to promote international collaboration on rare disease research. The Commission aims to further harmonise research through a  European Platform on Rare Diseases Registration, centralising information on patient registries accessible to all stakeholders. 

The Commission is also developing European Reference Networks to establish collaborative centres of expertise on rare diseases. It also aims to facilitate access to orphan products that are not systematically approved in all Member States. The present implementation report measures both achievements and future strategies to continue improving rare disease research and treatment, as well as the quality of life of patients and their families. Despite the recent advances presented in this report, considerable efforts are still required to ensure all rare disease patients are adequately cared for throughout the EU. 

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