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EURORDIS Tool Kit provides common format for upcoming EUROPLAN National Conferences for rare disease strategies

April 2013

EUROPLAN ConferenceThe European Project for Rare Diseases National Plans Development (EUROPLAN), co-funded by the European Commission (DG-SANCO), has 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 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 on Rare Diseases (EUCERD) Joint Action (2012-2015). The EUROPLAN National Conferences employ a common format, emphasising the unity of the rare disease community and key messages across Europe. Following the same format and content is essential for comparing how the same rare disease issues are addressed in different countries.

Each EUROPLAN National Conference 2012-2015 begins with a plenary session followed by specific workshops addressing the key elements of the national plans. The rare disease National Alliances, with relevant stakeholders, are mobilised as conference organisers. EURORDIS and its group of 10 Advisors from the National Alliances have developed a Tool Kit for conference organisers. The Tool Kit includes a description of the common format and methodology used for the EUROPLAN National Conferences; Guidelines for the workshop Chairs; and a Template for the conference final reports. The Tool Kit also contains six Content Guidelines corresponding to each of the workshop themes: Methodology and Governance of a National Plan; Definition, Codification, Information and Training; Research; Care – Centres of Expertise/European Reference Networks/Cross-border Healthcare; Orphan Drugs; and Social Services. These user-friendly Content Guidelines provide conference organisers with specific information, including relevant EU documents for each topic, and a list of related questions to help analyse and reflect upon the topics and prompt discussion during the workshops. The freely available Content Guidelines are adaptable to any group focusing on the topics.

An interactive map on the EURORDIS website makes it possible to stay informed of the locations and dates of the conferences. So far, six National Conferences have taken place under EUROPLAN 2012-2015 in Sweden, Greece, Slovakia, Russia, Ukraine and Georgia. The majority of the EUROPLAN 2012-2015 conferences will be held during 2013: Romania in May; Cyprus in June; Finland during the summer; Italy and Poland in September; France and Hungary in October; Lithuania, Luxembourg and Netherlands in November; and others at the end of the year or early 2014.

The Tool Kit, Interactive Map, information on EUROPLAN 2012-2015, and relevant EU texts are all available in the National Rare Disease Policy section of the EURORDIS website.

Louise Taylor, Communications and Development Writer, EURORDIS