Rare diseases (RD) have been identified as one of the paradigmatic fields in which actions conducted at the European level constitute the adequate response to their specific problems: poor recognition leading to diagnostic delay and inappropriate management including adapted social services, poor health outcomes, social burden, limited knowledge on natural history and pathophysiology leading to an insufficient development of new therapies. The low prevalence and the specificity of RD make that a global, multi-stakeholder approach, intended to gather specific expertise and to build shared strategies is necessary to address these issues.
The general objectives of RD-Action are to:
▪ Support the further development and sustainability of the Orphanet database, the biggest global repository of information on RD
▪ Contribute to solutions to ensure an appropriate codification of RD in health information systems
▪ Continue implementation of the priorities identified in Council Recommendation 2009/C151/02 and the Commission Communication (COM 2008 679) on RD, with a view to ensuring the sustainability of the recommended priority actions and to support the work of the Commission Expert Group on Rare Diseases (CEGRD).
This JA will expand and consolidate the achievements of the former JAs on RD supported by the European Commission: the Orphanet JA and the EUCERD JA. More precisely, this proposal has the ambition to help member states to implement the recommended measures adopted or to be adopted by the CEGRD and to produce the data necessary for countries to do so. Interactions between the production of data at the Orphanet database level and the implementation of policy priorities including codification will be strengthened during this JA.RD-Action large geographical coverage is key to success as it will promote the transfer of European recommendations into national policies and the collection of information and concerns from MS to the CEGRD, thus to the European Commission.

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The general objective of the project is to identify and validate a set of Day Surgery (DS) indicators and to develop the Information Systems on DS in Europe. This project proposes to analyse DS data and health indicators both at international organizations and MSs level. It will also identify and test potential indicators. DS development represents a priority being an important opportunity for health systems reorganization.
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The HoNCAB project is a timely initiative that strives to take advantage of the interval between the adoption of the Directive 2011/24/EU and its definitive application in the MSs. This is a delicate period in that many MSs may chose to apply either a more favourable approach or a more restrictive and budget conscious approach when transposing the Directive into National legislation. The chosen strategy hinges greatly on available information and this is where the HoNCAB project can fill the gap. Namely, by making available some preliminary but "real" data on the impact of patient mobility and by fine-tuning the methods of classification of the tariffs and the related techniques for comparison. Furthermore, the HoNCAB project aims to provide a framework for the launch of a pilot hospital network which will be quite extensive in its initial form and that will be designed to grow over time. Such a network will allow the participating hospitals to have a practical experience of the opportunities and critical issues of cross-border care and to share problems and solutions with other MS.
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The general objective of the project is to improve patient safety and quality of hospital care through the promotion of DS best practices and standards. This project intends to elucidate main issues concerning ambulatory surgery, investigating DS at different levels of MSs health systems, and also offer realistic solutions, recommending evidence-based best practices and standards identified through benchmarking. This initiative aims to provide some relevant, practical and flexible answers to European health systems increasingly facing an ethical and political dilemma regarding how to assure sustainable and equitable access to safe and high quality health care.

This initiative will study, review, identify and promote essential components of DS systems and units, i.e. structures, clinical and patients management processes. The project will compare, select and systematically promote best practices and standards. It will also develop measurement instruments to gauge patients compliance with protocols and DS managers and providers conformity with standard inputs and processes.
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