Project Duration – 01.04.2008 –
01.04.2011 (36 months)
10 Partners
Istituto Superiore di Sanità (ISS). National Centre for Rare Diseases (CNMR)
The Netherlands Organisation for Health Research and Development (ZonMw)
Instituto de Salud Carlos III (ISCIII)
Karolinska Institute (KI)
London strategic health authority
University of Tartu (UT)
European Organisation for Rare Diseases (EURORDIS)
Bulgarian Association for Promotion of Education and Science (BAPES)
Fundacion Canaria de Investigacion y Salud (FUNCIS)
Mario Negri Institute for Pharmacological Research (IRFMN)
39 Collaborating Partners from EU, USA, Canada, Turkey and Croatia
Total Budget: 1 090 883 euros
EAHC Co-Funding: 642 150 euros
Project Coordinator: Prof. Domenica Taruscio, Istituto Superiore di Sanità, Italy
Official Website – www.europlanproject.eu
Project Objectives:
– Develop Recommendations
The EUROPLAN recommendations are a tool to guide step by step efforts to elaborate national plans or strategies for rare diseases and include priority areas and actions of intervention. The aim is to make such initiatives consistent with a common strategy at European level, facilitate the coherence of national initiatives with best practices identified and stimulate the exploitation of possible synergies.
– Collect and Disseminate Best Practices
Best practices are collected and disseminated in order to contribute to share experience, data and effective strategies.
– Select Indicators
Indicators are selected to monitor the implementation of national plans and strategies and to evaluate their impact. A common set of indicators will also contribute to ensure the comparability of data among Member States and the implementation status of the Council Recommendation on Rare Diseases in the EU countries.
– Support the National Conferences
The National Conferences are events held in 2010 in 16 Member States, organized by national rare diseases alliances, where national stakeholders discuss the European strategy, EUROPLAN recommendations and their applicability in their own country. The National Conferences are coordinated by EURORDIS and organized in conjunction with national authorities.
– Ultimately, EUROPLAN aims to assist EU Member States in developing national health policies to improve equal access and availability of prevention, diagnosis and treatment for people with rare diseases.
Background
“The Council Recommendation on European Action in the field of Rare Diseases”, adopted by the EU Council in June 2009, recommends Member States to adopt national plans or strategies for rare diseases before the end of 2013.
EUROPLAN recommendations will provide tools to Member States for developing a plan or strategy, linking with a common framework at the European level.
This “double-level” approach is respectful of national decisions but is expected to ensure a coherent and consistent progress in EU rare diseases care.