Since 2008 rare diseases are a priority area for action in Public Health Programmes.
Considering rare diseases as a whole, and not singularly, helps highlighting and recognizing a series of healthcare problems and planning focused public health actions involving groups of population with common needs, safeguarding at the same time their peculiarities and differences.
"Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions on Rare Diseases: Europe's challenges (COM(2008) 679 final)" and "Council Recommendation of 8 June 2009 on an action in the field of rare diseases (2009/C 151/02)" allowed common policy guidelines to be shared everywhere in Europe.
EUROPLAN (2008-2011, 2012-2015)
The European Project for Rare Diseases National Plans Development (EUROPLAN) is a project co-funded by the EU Commission (DG-SANCO) to promote and implement National Plans or Strategies to tackle rare diseases, to share relevant experiences within Countries, linking national efforts with a common strategy at European level. This “double-level” approach ensures that progress is globally coherent and follows common orientations throughout Europe.
A three-year project coordinated coordinated by Italian National Institute of Health - Italian National Centre for Rare Diseases.
It involved 57 Associated and Collaborating Partners (clinicians, scientist, health authorities, patients’ Groups) from 34 Countries and EURORDIS. Its main goal was to elaborate agreed tools for the development and implementation of National Plans or Strategies following the European Council Recommendation.
All objectives have been reached and the following documents have been elaborated:
a three-year project, embedded in the EUCERD Joint Action as Work Package 4, it is coordinated by the Italian National Institute of Health - Italian National Centre for Rare Diseases.
Its main goal is to establish an international and interactive network of stakeholders (mainly policy makers) to speed up the elaboration and the implementation of Rare Diseases National Plans/Strategies, trought scientific and technical assistance, Workshops and the active participation of patients Groups (EURORDIS and National Alliances).
EUROPLAN will increase the capacity building of participants, will support Countries with different geographical / economical concerns and different states of readiness for plan delivery by Conferences and education tools, sharing experiences, disseminating successful practices. Finally, it will identify feasible EUROPLAN indicators to perform a pilot study among all participant Countries.
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