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The European
Project for Rare Diseases National Plans Development (EUROPLAN) is a three-year
project of the Programme of Community action in the field of Public Health
(2003 - 2008), which began in April 2008. The main goal is to provide National Health Authorities with a supporting tools for the development and implementation of National Plans and Strategies for rare diseases (RDs) following the recently agreed European Council Recommendation on an action in the field of RDs (2009/C 151/02). This supporting tools will be composed of three documents focused on defined priority areas: the Guidance document on recommendations for the definition and implementation of National Plans and Strategies for rare diseases; the report on current practices and relevant cases in the field of rare diseases; and the document on the recommended set of indicators for monitoring and evaluating the implementation of national initiatives. The National Centre for Rare Diseases (Italian Institute of Health - Istituto Superiore di Sanità, Italy) is the leading partner that organize the contributions from 31 countries and Eurordis (the European Organisation for rare diseases) ensuring a broad representation of different EU contexts and experiences and patients' point of view. In addition, the project ensures an inclusive and wide engagement of stakeholders - Ministries, regional and local authorities, health care planners, programme managers, health care professionals, researchers and patients. Expected outputs of EUROPLAN are:
The "Council Recommendation on a European action in the field of rare diseases" allows common policy guidelines to be shared everywhere in Europe. The supporting tools prepared by EUROPLAN to promote and develop National Plans or Strategies for RDs and the spreading of relevant cases in the field of rare diseases within EU MSs will link national efforts with a common strategy at European level. This "double-level" approach ensures that progress is globally coherent and follows common orientations throughout Europe. EURORDIS, one of the EUROPLAN associated partners, has in charge the organization of 16 National Conferences envisaged from May to December 2010. These meetings will allow National stakeholders to discus on the application of the EUROPLAN Supporting Tools, which include Guidance document on the Recommendations for the definition and implementation of National Plans and Strategies for rare diseases as well as report on current practices and relevant cases in the field of rare diseases and the recommended set of indicators for monitoring and evaluating the implementation of National initiatives. The Polish EUROPLAN conference, organized by the Polish Cystic Fibrosis Foundation MATIO in cooperation with EURORDIS will take place on October 22nd 2010 in Krakow and will gather representatives of all groups working in the field of rare diseases in Poland. Comitee of organising Conference Profesor zwyczajny Wojciech Cichy Profesor dr hab. Tomasz Grodzicki Mirosław Zieliński Lek. med. Marcin Mikoś Paweł Wójtowicz Place: Uniwersytet Jagielloński - Collegium Medicum Adres: ul. św. Anny 12 31-008 Kraków |