Reports of EUROPLAN National Conferences 2012-2015

The EUROPLAN National Conferences are aimed at fostering the development of comprehensive National Plans or Strategies for Rare Diseases addressing the unmet needs of patients living with a rare disease and integrating current European policies and recommendations in this field.

The Final Reports from the Conferences reflect the national discussions around rare disease policy in light of European guidelines, and identify bottlenecks and actions to be taken to improve care and services for people living with a rare disease.

EUROPLAN National Conferences share the same philosophy, objectives and format, and they follow common content guidelines. The content can be adapted according to the national situation of each country and its most pressing needs.

The common format of the EUROPLAN National Conference envisages plenary sessions and workshops set up according to specific themes:

  1. Methodology and Governance of a National Plan
  2. Definition, codification and inventorying of RD; Information and Training
  3. Research on Rare Diseases
  4. Care - Centres of Expertise / European Reference Networks/Cross-border Healthcare
  5. Orphan medicines
  6. Social Services for Rare Diseases

The EUROPLAN Conference Final Reports provide details of the discussion around the six themes addressed during the workshops and outline the proposals that emerged in each of them, as well as plenary discussions and conclusions. 

Please find the Reports of the 24 EUROPLAN National Conferences below. They are published as soon as publicly available (in blue).


About the EUROPLAN National Conferences


20 EUROPLAN National Conferences in the EU and 4 in other European countries are organised within the framework of the Joint Action of the European Committee of Experts on Rare Diseases (EUCERD) 2012-2015.

The Conferences are jointly organised by a National Alliance of rare disease patients’ organisations and EURORDIS. For this purpose, EURORDIS nominated 10 EURORDIS-EUROPLAN Advisors - all belonging to a National Alliance - specifically in charge of supporting two to three National Alliances in the organisation of their conference. Conference organisers ensure that the EUROPLAN Conferences involve all national stakeholders relevant for developing a plan/strategy for rare diseases.

Following the success of the first set of 15 EUROPLAN National Conferences organised within the European project EUROPLAN (2008-2011), most EU countries and 4 other European countries have considered the need to continue or even start the dialogue with all stakeholders to eventually adopt or sustain a National Plan/Strategy for rare diseases.

Details on how to organise a EUROPLAN National conference can be found on the EUROPLAN – EURORDIS Tool Kit for National Conferences.

Page created: 28/04/2014
Page last updated: 24/11/2015
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