National Center for Rare Diseases

EUROPLAN PROJECT

The European Project for Rare Diseases National Plans Development (EUROPLAN) is a three-year project of the Programme of Community action in the field of Public Health (2003 - 2008), which began in April 2008.

EUROPLAN is coordinated by the Italian National Center of Rare Diseases (ISS) and includes 33 countries and Eurordis (the European Organisation for rare diseases).

The main goal is to develop recommendations on how to define a strategic plan for rare diseases. The recommendations will provide information on the different steps to develop a strategic plan and, more important, it will include priority areas and actions of intervention in the field of rare diseases.

The project will collect and disseminate information on EU MS national initiatives on rare diseases, on expectations on national plans for rare diseases and on best practices contributing to share experiences, data and effective strategies to address rare diseases.

This will ensure a broad representation of different EU context and experiences and patients’ point of view. In addition, the project will ensure an inclusive and wide engagement of stakeholders - Ministries, regional and local authorities, health care planners, programme managers, health care professionals, researchers and patients.

The expected outputs of EUROPLAN are:

- To stimulate a discussion and reach a consensus on the importance of national plans for structuring all relevant actions in the filed of rare diseases
- To identify priority areas and actions of intervention for addressing rare diseases
- To promote the development of national plans for rare diseases within EU MS providing an instrument to support Countries in designing national plans for rare diseases
The elaboration of a "Council Recommendation on a European action in the field of rare diseases" will ensure that common policy guidelines are shared everywhere in Europe. The recommendations developed by EUROPLAN promoting national plans and best practices for rare diseases within EU MS will link national efforts with a common strategy at European level. This "double-level" approach will ensure that progress is globally coherent and follows common orientations throughout Europe.

For more information visit the Europlan website

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