The EUCERD Joint Action: Working for Rare Diseases (N° 2011 22 01) was co-funded by the European Commission (Executive Agency for Health and Consumers, now CHAFEA) in the context of the European Union’s Second Programme of Community Action in the field of Health. It started on 1 March 2012 and ended in 2015, supporting the activities and mandate of the European Union Committee of Experts on Rare Diseases until the end of 2013 when the EUCERD ended its mandate. From 2014 it supported the activities of the European Commission Expert Group on Rare Diseases which replaced the EUCERD.
This Joint Action was led by Prof. Kate Bushby, former Vice-Chair of the EUCERD and member of the new Expert Group.
The EUCERD was mandated to assist the EC in formulating and implementing the Community’s activities in the field of rare diseases, to foster exchanges of relevant experience, policies and practices between the Member States and stakeholders. Rare diseases are a priority area for action in the Public Health Programme (2008-2013). These activities have been defined in the Communication of the European Commission, entitled “Rare Diseases: Europe’s challenge” (11 November 2008) and the Council Recommendation on an action in the field of rare diseases (8 June 2009).
Specifically, this Joint Action addressed the following priority areas of the Council Recommendation:
- Enhancing the visibility and recognition of RD;
- Contributing to the development and dissemination of knowledge on RD, from specialised research, through to the support of the healthcare professionals and the empowerment of patients;
- Contributing to improvements in access to quality services and care, from diagnosis, through to care and social support and innovative therapies.
To achieve its aims, the Joint Action built on the achievements of previous European initiatives in the field, such as the EC Rare Disease Task Force, Orphanet, the Europlan project, and the outputs of and the several rare disease networks that have received EU funding over the past years.
This Joint Action comprised five main areas of work:
- the implementation of plans and strategies for rare diseases at national level (read more),
- the standardisation of rare disease nomenclature at international level (read more),
- mapping the provision of specialised social services and integration of rare diseases into mainstream social policies and services (read more),
- the leveraging of the value of EU networking for improving the quality of care for rare diseases (read more),
- the integration of RD initiatives across thematic areas and across Member States (read more).
This last area of work is of critical importance and aimed, with the input of the EUCERD, to propose a model for sustainable action.
The expected outcome is an integrated strategy for the implementation of rare disease policies through the exchange of experience between Member State health authorities already involved in rare disease policy definition and implementation and via a series of recommendations from the EUCERD and clear communication of these recommendations to national policy makers, patient organisations and learned societies.
Specific expected outcomes are the following:
- Enhanced visibility of RD and wider dissemination of related activities and knowledge
- Accelerated implementation of the inter-sectoral national action plans for rare diseases
- Adequate and established definition, classification and codification of rare diseases
- Wider recognition of the value and support to the development of specialised social services
- Identification of actions allowing to improve the access to higher-quality healthcare, covering the entire continuum, from diagnosis to care and rehabilitation, in particular through linking national dedicated structures with all European Reference Networks;
- A model for sustainable action in the area of RD, across thematic areas and geographical barriers, providing a framework for recognition of rare diseases and sharing of knowledge and expertise.
The sole responsibility for the information provided in this site and the reports produced via the EUCERD Joint Action N°2011 22 01 published on this site lies with their authors: the Executive Agency for Health and Consumers is not responsible for any use that may be made of the information contained therein.