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 improve the quality of antibiotic prescribing for children in Europe. The specific objectives include determining the variation in antibiotic prescribing for common childhood infections in the community and hospitals across Europe, compared to local guidelines. The project will also systematically compare rates of antimicrobial resistance. There has been a limited focus on education on antimicrobial resistance on pediatricians. The project will aim to kick start a new network of PID specialists working in close collaboration and building on the existing EU funded surveillance projects. ARPEC will use key opinion leaders within ESPID to try to develop the evidence base for the variation in antibiotic resistance and prescribing. This will then directly translate into long term educational programmes focussing on trainee pediatricians and formalise educational training packages in prudent antimicrobial prescribing.
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Antimicrobial resistance (AMR) is a serious public health threat that is gaining swift ground. The increase of multi-resistant bacteria associated to the lack of new antibiotics represents a threat to global health. Some patients are faced with no therapeutic solutions as some bacteria resist to all antibiotics. Moreover, “old” antibiotics and to some extent more “recent” ones are gradually removed from the market because they are not economically sustainable, albeit being still possibly efficient. The issue of antimicrobial resistance is a real challenge that decision-makers are well aware of and has gained a high priority among public health challenges.
A closely related challenge is the issue of Healthcare Associated Infections that shall not be considered separately. In fact, infection prevention and control strategies should go hand in hand with i) prudent use of antibiotics ii) appropriate tools for monitoring and surveillance and iii) accurate diagnostic tests to decide on the right therapy.
The various national, European and international initiatives that have emerged over the last decade have shown a great commitment to actively tackle these issues.It is essential that all actors in the field of AMR join forces so as to avoid duplication of efforts and ensure greater coherence. Moreover, it is essential that the strategies adopted extend beyond the sole human health domain and bring a global One Health response.
The overall objective of the AMR-HCAI JA is to ensure that policies for control of AMR and HCAI are adopted and implemented across EU MS in a coordinated way, ensuring national specificities are accounted for, in line with the ECDC and WHO guidelines and recommendations, and in conjunction with other European initiatives.This will be made possible by bringing together different networks of policy makers, experts and organizations on AMR and HCAI working in different European and International initiatives and projects relevant for policy decision.
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The focus of the conference will be on the discrepancy between the antibiotic
resistance threat and the lack of new drugs foreseen in the pharmaceutical sector. The aim is to explore ways
of creating incentives for the development of new drugs. Such incentives could be changes in the regulatory
mechanisms, innovative financial instruments or other innovative mechanism.
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