European Project for Rare Diseases National Plan Development (EUROPLAN)

Título completo: European Project for Rare Diseases National Plan Development (EUROPLAN)

Subvencionado por: Comisión Europea (DG SANCO A/101120)

Subvención concedida: 25.586 €

Duración: 3 años (01/04/2008-31/03/2011)

Investigador principal:  Domenica Taruscio

Investigadores asociados (SESCS): Lilisbeth Perestelo Pérez, Jeanette Pérez Ramos

Objetivos:
- Elaborate recommendations as “tools” to facilitate the development of a national plan or strategy for rare disease
The EUROPLAN recommendations are a tool to guide step by step efforts to elaborate national plans or stratagies for rare diseases and include priority areas and actions of intervention. The aim is to make such inititives consistent with a common strategy at European level, facilitate the coherence of national initiatives with best practices identified and stimulate the exploitation of possible synergies.
- Elaborate indicators for monitoring national plans/strategies
Indicators are selected to monitor the implementatioin of national plans and strategies and to evaluate their impact.
A common set of indicators will also contribute to ensure the comparability of data among Member States and the implementation status of the Council Recommendation on Rare Diseases in the EU countries.
- Discuss the recommendations with stakeholders
- Disseminate the recommendations

Descripción:
EUROPLAN 2008-2011 is coordinated by Dr. Domenica Taruscio – Director of the Italian National Centre for Rare Diseases (Italian National Institute of Health, 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.
EUROPLAN 2008-2011 involves stakeholders from 34 countries: ministries, authorities, health care professionals, researchers as well as patients, represented by EURORDIS (European Organisation for Rare Diseases).
The project is organized in 8 Work Packages (WPs):
WP1-WP3 deal with the management of the project and the dissemination and evaluation of the results.
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 Recommendations Document within the specific national context.

Persona de contacto: Lilisbeth Perestelo Pérez (lperperr@gobiernodecanarias.org)