Objectives

1. Describe EU Member States initiatives on rare diseases;
2. List priority areas and actions of intervention to include in a National Plan or Strategy for rare diseases;
3. Develop indicators for monitoring the implementation and evaluating the impact of National Plan or Strategy for rare diseases;
4. Identify previous and current experiences;
5. Elaborate the Guidance Document containing the recommendations for the designing of the National Plans or Strategies for rare diseases;
6. Discuss the Guidance Document containing the recommendations throughout National Conferences (15 countries) with local stakeholders;

• Elaborate the final version of the Guidance Document containing the recommendations including all stakeholders’remarks;
• Launch the final version of the Guidance Document containing the recommendations during the final international conference.
• Develop indicators for monitoring the implementation and evaluating the impact of National Plans for rare diseases;

Structure of the project

EUROPLAN is coordinated by Dr. Domenica Taruscio – Director of the National Centre for Rare Diseases (Istituto Superiore di Sanità, Italy).

The Coordinator is supported by the Steering Committee (SC), one representative from each associated partner for scientific coordination, and by the Advisory Committee (AC), leading experts in the field of rare diseases for external independent evaluation.

The project is organized in 8 Work Packages (WPs).

Work packages overview

• WP1-WP3 deal with the management of the project and the dissemination and evaluation of the results.
• WP4-WP8 are the core WPs.

WP4 collects of information on the initiatives undertaken by EU MSs on rare diseases. A dedicated survey is aimed at gathering examples of different MSs experiences and lessons learned allowing the sharing of information among Member States.

WP5 develops indicators for monitoring the implementation and for evaluating the impact of National Plans or Strategies for rare diseases.

WP6 analyses case studies to identify relevant experiences.

WP7 develops the content of the EUROPLAN recommendations including a methodological guidance to design comprehensive and integrated strategies for guiding and structuring all relevant actions in the field of rare diseases.

WP8 deals with the organisation of National Conferences where national stakeholders are convened to discuss the EUROPLAN Guidance Document within the specific national context.

A detailed work plan of the activities is reported in the following figure.