Eurordis - Rare Disease Europe

Actions to support the implementation of national plans or strategies for Rare Diseases are back on the agenda with EUROPLAN II – the continuation of an EC-funded project to provide national health authorities with tools for the development of national strategies following the European Council Recommendation on an Action in the field of Rare Diseases.

EURORDIS and its National Alliances have spearheaded this process and act as catalysers in the development and viability of National Plans. EURORDIS worked with 15 National Alliances in EUROPLAN I (2008-2011) and is collaborating with 24 Alliances or national patient groups in EUROPLAN II in order to facilitate the organisation of national conferences aimed at promoting key measures and fostering the dialogue amongst relevant stakeholders.

As part of EUROPLAN II, 23 conferences will take place in 19 EU countries and 4 non-EU countries: Belgium, Croatia, Cyprus, Denmark, Finland, France, Greece, Hungary, Ireland, Italy, Luxembourg, Netherlands, Poland, Portugal, Romania ,Slovakia, Spain, Sweden, United Kingdom, Georgia, Russia, Serbia and Ukraine.

The conferences are the cornerstone of this project as they aim to promote the implementation of a national policy for rare diseases, adapted to each country’s specific needs while integrating European policies in their national system. In order to fulfil this objective, EURORDIS relies on 10 patient representatives who act as Advisors to the National Alliances in charge of organising the conferences. The Advisors will ensure that a common methodology is used and that all conferences follow the same format and touch on all the relevant topics.  The conferences, which are patient led, must ensure the participation of all the stakeholders needed to implement the right policies.

A EUROPLAN II inception workshop was organised on 10-11 September in Rome by Prof. Taruscio, of the Italian Institute for Health, leader of EUROPLAN II. It was attended by health authorities from EU Member States as well as from Armenia, Georgia and Norway (altogether 27 countries). The meeting aimed to develop common suggestions for specific activities in support of national planning.