Through the EUCERD Joint Action, the EUCERD is currently building on the outcomes of the EUROPLAN project (2008 – 2011) to provide technical and scientific support for the development and implementation of national plans/strategies for rare diseases in Member States (MS). The Council Recommendation on an action in the field of rare diseases (8 June 2009) recommends that MS elaborate and adopt, by 2013, a national plan or strategy for rare diseases.
This support will provided via :
- The establishment an interactive network of stakeholders, mainly policy makers, to share experiences and develop;
- The organisation of annual workshops aimed at developing a capacity-building report, bringing together members of this network to analyse the state of the art, to establish priorities for countries according to their size, GNP, national health system, and to identify feasible indicators for data collection in MS ;
- The organisation of national conferences by EURORDIS and national patient alliances to support the process of elaboration of national plans/strategies and to assess the transferability of EU policy documents ;
- A dedicated website to implement and share documents and experiences between MS (www.europlanproject.eu).
Europlan website :
- European Structural Funds for Rare Disease Plans, 29-31 October 2014, Rome –organised through the EUCERD Joint Action N°2011 22 01
- National plans/strategies for rare diseases workshop: Report and Annexes , 8 May 2014, Berlin – organised through the EUCERD Joint Action N°2011 22 01
- Key indicators for national plans/strategies workshop, 25 March 2013, Rome – organised through the EUCERD Joint Action N°2011 22 01
- Inception Workshop on National Planning for Rare Diseases, 10-11 September 2012, Rome – organised through the EUCERD Joint Action N°2011 22 01
- National conferences toolkit on EURORDIS website
- National conference reports
Europlan (2008-2011) reports:
- Europlan Report: Recommendations for the Development of National Plans for Rare Diseases (July 2010)
- Europlan Report: Indicators for monitoring the implementation and evaluating the impact of National Plans or Strategies for RD (February 2011)
- Europlan Report: Key outcomes of the 15 EUROPLAN national conferences
- Europlan National Conference Reports
Work theme leader:
Domenica Taruscio – Istituto Superiore di Sanità in (Italy)
Domenica Taruscio is a member of the EUCERD and Director of the National Centre of Rare Diseases at the Istituto Superiore di Sanità in Italy. She was the coordinator of the EUROPLAN project and is currently coordinator of the EPIRARE project. She is also involved in the E-Rare and EUROCAT projects.
EURORDIS, the European Organisation for Rare Diseases, is heading the co-organisation of the national conferences in cooperation with national alliances rare disease patient organisations.
The sole responsibility for the information provided in this site and the reports produced via the EUCERD Joint Action N°2011 22 01 published on this site lies with their authors: the Executive Agency for Health and Consumers is not responsible for any use that may be made of the information contained therein.