The European Organisation for Rare Diseases – EURORDIS – represents the voice of an estimated 30 million people living with a rare disease in the EU, and their families. The proposal submitted for Operating Grant FPA 2015-2017 is structured around four main objectives of utmost importance for the European rare disease patients’ community:1. To consolidate the Rare Disease patients’ community and strengthen the RDs patients’ voice;2. To actively engage rare disease patients’ representatives into the effective implementation and monitoring of relevant EU legislation / strategies and support their integration at national level;3. To build capacities and empower rare disease patients advocates, members and volunteers;4. To sustain human, financial and organisational resources. EURORDIS achieves these objectives through the following activities: collecting data as well as gathering, disseminating and sharing information; support capacity-building to empower patients’ advocates; providing patients, families, carers, decision-makers and other stakeholders with relevant expertise to inform policy-making; generating EU added-value and support Member States efforts; promoting translational research towards therapeutic intervention for patients; serving as a relay of two-ways information flow between policy makers and rare disease patient groups; promoting access to high quality and safe healthcare services for rare disease patients throughout the EU. Through these activities, EURORDIS will contribute to the implementation of the priorities of the Third Public Health Programme which are to complement, add value and support national policies and strategies implemented by Member States to improve health, reduce health inequalities, support health capacity-building, generate and disseminate health information, contribute to innovative, efficient and sustainable health systems, support cross border healthcare in order to facilitate access to better and safer healthcare.
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The human population is confronted with emerging and re-emerging infectious pathogens that can cause serious cross-border outbreaks. A recent example is the Ebola outbreak requiring strong diagnostic, clinical, and public health measures in Europe and abroad in order to get this incident under control. The JA EMERGE is in compliance with the European policy (Decision No 1082/2013/EU) where the need for an efficient, rapid and coordinated response to high threat pathogens is defined. The JA EMERGE comprises a European network with more then 40 diagnostic laboratories focused on risk group 3 bacteria and risk groups 3 and 4 viruses. It will act in a so-called inter-epidemic mode (IEM) which can be activated and switched into an outbreak response mode (ORM) on request by the Health Security Committee in order to direct all activities to the outbreak management. A number of other laboratory networks, institutions and agencies are contributing to the management of cross-border infectious outbreaks. EMERGE will provide a platform for establishment and consolidation of a common, coordinated and effective response to infectious disease outbreaks at EU level and abroad (WP4). State of the art and new diagnostic methods for high threat pathogens, including in-house and commercial kits, will be evaluated for their applicability and recommended in outbreak situations when suitable (WP5). External quality assurance exercises will ensure best approaches for laboratory responsiveness in outbreak situations (WP6). These activities must be supported by an appropriate training to share best practices of diagnostics and bio-risk management (WP7). In conclusion, the general objective will be to ensure efficient response to serious emergent and re-emergent cross-border events by reinforcing the existing EU network of BSL 3 and BSL 4 laboratories which are already active in the field of identification of dangerous bacterial and viral human pathogens.
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The general objective of the 2011 European Public Health Conference is to further the aims of the second European Community action in the field of health by building the capacity of public health and welfare experts, practitioners and policy makers through enhancing the European exchange of knowledge, policy and best practice.
More specifically, the 2011 European Public Health Conference aims to:
- offer a wide platform for exchanging knowledge, sharing research outcomes and discussing best practice in all fields of health and welfare and their interrelationship;
- provide a plenum for EU policies and projects with an audience of public health and welfare professionals;
- create, support and promote close and active collaboration links among European public health organisations and schools of public health;
- increase knowledge and skills among representatives of EUPHA and ASPHER member associations by the organisation of capacity building seminars.
- mobilise public and official bodies in the organising country and the Nordic countries for the promotion of public health.
The above general objective and aims are linked directly to the third objective of the second Health Programme (2008-2013) - to generate and disseminate information and knowledge.

The parallel scientific programme of the conference, which is based on submitted and ranked abstracts, covers the objectives and strands of the 2010 Work Plan. Workshops and presentations will focus on the various priority areas of the Work Plan such as quality of healthcare and patients` safety, sustainability of health systems in the face of challenges such as the ageing population and inequalities in health within and between EU Member States. EUPHA sections and ASPHER working groups cover priority issues such as mental health, communicable diseases and child and adolescent health in half-day or full-day pre-conferences.

The conference offers a meeting place for various projects funded by the second Health Programme and the 7th Research Framework Programme.


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The European Organisation for Rare Diseases – EURORDIS – represents the voice of an estimated 30 million people living with a rare disease in the EU, and their families. The proposal submitted for Operating Grant FPA 2015-2017 is structured around four main objectives of utmost importance for the European rare disease patients’ community:
1. To consolidate the Rare Disease patients’ community and strengthen the RDs patients’ voice;
2. To actively engage rare disease patients’ representatives into the effective implementation and monitoring of relevant EU legislation / strategies and support their integration at national level;
3. To build capacities and empower rare disease patients advocates, members and volunteers;
4. To sustain human, financial and organisational resources.

EURORDIS achieves these objectives through the following activities: collecting data as well as gathering, disseminating and sharing information; support capacity-building to empower patients’ advocates; providing patients, families, carers, decision-makers and other stakeholders with relevant expertise to inform policy-making; generating EU added-value and support Member States efforts; promoting translational research towards therapeutic intervention for patients; serving as a relay of two-ways information flow between policy makers and rare disease patient groups; promoting access to high quality and safe healthcare services for rare disease patients throughout the EU.

Through these activities, EURORDIS will contribute to the implementation of the priorities of the Third Public Health Programme which are to complement, add value and support national policies and strategies implemented by Member States to improve health, reduce health inequalities, support health capacity-building, generate and disseminate health information, contribute to innovative, efficient and sustainable health systems, support cross border healthcare in order to facilitate access to better and safer healthcare.
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