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First EUROPLAN 2012-2015 National Conferences move Sweden and Greece closer to developing a sustainable rare disease policy framework

January 2013



Recent conferences in Sweden and Greece inaugurated the second European Project for Rare Diseases National Plans Development (EUROPLAN 2012-2015), co-funded by the European Commission (DG-SANCO) with the goal of promoting and implementing policies as delineated by the Council Recommendation on an action in the field of rare diseases, which encourages each EU Member State to develop a rare disease strategy by the end of 2013. The Greek and Swedish EUROPLAN National Conferences attracted public and private stakeholders from all key areas.

In November, Rare Diseases Sweden (Sällsynta Diagnoser) organised its second EUROPLAN National Conference with over 150 participants attending. A capacity-building workshop beforehand enabled patient representatives to participate in the conference discussions. A draft Strategy for Rare Diseases prepared by the Swedish Board of Health and Welfare was presented and discussed and the outcome was considered positive. “For the first time, Members of Parliament and decision-makers at regional level proposed special budgets for the implementation of the strategy,” highlighted Maria Gardsäter, Rare Diseases Sweden Project Leader and EURORDIS-EUROPLAN Advisor.

Greek EUROPLAN II conferenceIn December, a second EUROPLAN National Conference was organised by Greek Rare Diseases Alliance PESPA under the auspices of Greek President Karolos Papoulias and some 250 participants, including Antoni Montserrat, responsible for rare diseases at the European Commission. The economic situation has hampered the implementation of the Greek Action Plan for Rare Diseases (2008-2012). The need to identify priorities within a common EU framework was stressed and there was broad consensus to implement concrete actions around Centres of Expertise, patient participation in the decision-making process, and the use of the World Health Organization’s International Classification of Diseases coding for rare diseases and registries.

The first EUROPLAN project (2008-2011) organised 15 national conferences. Under EUROPLAN 2012-2015, 25 national conferences, including five non-EU countries, are being coordinated by EURORDIS within the European Union Committee of Experts for Rare Diseases (EUCERD) Joint Action (2012-2015). The Swedish and Greek EUROPLAN National Conferences demonstrate that patient advocates and other key stakeholders are united in their determination to establish national policy frameworks for rare diseases.