Synthesis report and national reports

The rare disease community needs to take necessary steps towards outlining high quality and effective national plans or strategies for rare diseases to improve:

  • access to care for patients,
  • their integration in the civil society
  • and, ultimately, their quality of life.

The EUROPLAN National Conferences were organised within the EUROPLAN project (April 2008 – March 2011) to promote the design, adoption and implementation of national plans or strategies for rare diseases.

In 2010 and early 2011, 15 National Rare Disease Alliances organised a EUROPLAN Conference in their respective country in collaboration with EURORDIS and its six Advisors.

Each conference presented and discussed the application at a national level of the Commission Communication and EU Council Recommendation on an action in the field of rare diseases, as well as the EUROPLAN supporting tools - Recommendations and Indicators – for the development of national plans.

These EUROPLAN National Conferences were attended by a wide range of stakeholder groups. Each conference had to follow the same format and content for ease of comparison of issues tackled in the debates. The final report of each National Conference reflects this common format.

Synthesis report 

A Synthesis Report was produced by EURORDIS summarising the main outcomes of the 15 EUROPLAN National Conferences, as emerged from the 15 Conferences’ Reports. It provides an overview of the main findings of the debates on national rare disease policies in light of the EU strategic indications.

National reports

Learn about the outcomes of the national discussions on the seven themes covered by the EU Council Recommendation:

  • governance and monitoring of a National Plan for rare diseases;
  • defining and inventorying rare diseases;
  • research on rare diseases;
  • Centres of Expertise and European Reference Networks;
  • gathering expertise at European level;
  • patient empowerment;
  • sustainability of rare disease policies.

Key facts and figures of the 15 National Conferences

  • 15 National Conferences in 2010 and 2011
  • 15 participating countries
  • Good geographical distribution (Northern and Southern Europe, big and small countries, new and old EU members and one candidate member)
  • National events in 3 additional countries (outside the scope of EUROPLAN)
    • More than 2000 total participants
  • 150 participants per National Conference on average
  • 6 EURORDIS Advisors supervising the organisation of 2 or 3 Conferences each
  • Common framework for all Conferences
  • 7 Themes based on the Council Recommendation
    • Governance
    • Definition, coding and classification
    • Research
    • Standards of care
    • Patient empowerment
    • Sustainability
    • Pooling of expertise
  • Variety of national stakeholders attended:
    • 14% health professionals
    • 20% researchers
    • 10% industry
    • 14% national public authorities and politicians
    • 40% patient representatives
  • Great awareness-raising and momentum-building opportunity to promote National Plans and Strategies for rare diseases in all countries involved.

 

Page created: 22/04/2011
Page last updated: 07/11/2014
 
 
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