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EUCERD Joint Action: working for rare diseases [EJA] [20112201] - Joint Actions
General objectives

The EUCERD (EU Committee of Experts on Rare Diseases) is mandated to assist the EC in formulating & implementing the Community`s activities in the RD field, to foster exchanges of relevant experience, policies & practices between the MS & stakeholders.

The general objective of this JA is to support this mandate.

Specifically this JA will address the following priority areas of the recommendation:
a. Enhancing visibility and recognition of RD;
b. Contributing to the development and dissemination of knowledge on RD, from specialized research, through to the support of the healthcare professionals and the empowerment of patients;
c. Contributing to improvements in access to quality services and care, from diagnosis, through to care and social support and innovative therapies.

Strategic relevance and contribution to the public health programme

The European added value is clear from the urgent need to share experience in rare diseases. No MS, even those with the largest populations, can tackle the challenges of RD by themselves due to the need for information generation and sharing to be done on an international scale and for expert opinions to be sought from a broad range of areas. The enthusiasm for other states to join with the EU on planning for rare diseases indicates that EU policies have already led the world in this area. These investments have resulted in developing collaborative tools and expertise that are now well placed and accepted by policy makers and stakeholders alike. It will be the work of the EJA to take stock of and improve existing achievements and embed them in future policy to ensure their sustainability. This move to integrating various strands of work and the drive towards sustainability are the major innovative aspects of this JA. By consolidating work already done it will form the platform for the implementation of policies at the level of patient care.

Methods and means

WP4 will ensure technical assistance and capacity building to policy makers through workshops, establishing an interactive EU RD policy makers public health network & will follow the proven format of national EUROPLAN conferences, involving the national alliances of RD patient groups
WP5 will focus on literature surveys, RD experts and integration with WHO procedures to develop a RD nomenclature and collect stakeholder feedback on implementation.
WP 6 will use workshops and consensus discussion to identify best practice indicators for social care for patients and to promote the integration of RD into social policies and services
WP7 will work through adapted information collection tools to identify & share information on current practices in care of RD, with a view to cover the entire continuum of care; it will further analyze the characteristics of national centres of expertise
WP8 will work via the integration of ongoing RD initiatives via data collation and dissemination, linking other joint actions across Europe and the integration of national & disease specific policies

Expected outcomes period

-Implementation of the inter-sectoral action plans for RD at national (member state) level by 2013;
-Implementation of an exhaustive coding and appropriate classification of RD in all international nomenclatures;
-Mapping the provision of specialized social services and integration of RD into mainstream social policies and services;
-Mapping the organization of healthcare systems and good practices in RD, covering the entire continuum, from prevention, on to diagnosis, care and rehabilitation;
-Proposal of a model for sustainable action in the area of RD conceptualized on the basis the integration of RD initiatives across thematic areas and across MS, providing a framework for recognition of rare diseases and sharing of knowledge and expertise (key outcome)
-Delineation and promotion of the state of the art of activities in the field of RD at MS and EU and internationally;
-Provision of collaborative tools for the RD community.

Start date: 01/03/2012
End date: 01/09/2015
Duration: 42 month(s)
Current status: Finalised
Programme title: Second Programme of Community action in the Field of Health 2008-2013
EC Contribution: € 2 994 023,00
Portfolio: Rare diseases