The TB Europe Coalition (TBEC) is an advocacy network that brings together civil society representatives (individuals and organisations) from across the WHO European Region; in order to strengthen the role of civil society within the region response to tuberculosis (TB), and to increase the political and financial commitment required to effectively control the epidemic in the region.
The year 2016 is another critical year for the fight against tuberculosis (TB) in Europe. The latest evidence continues to affirm that the fight against TB, and particularly drug-resistant TB, is far from won in the region and sustained community advocacy, capacity building, and high-level advocacy are needed to achieve this goal.

Main specific objectives of the programme:
1) Increase understanding of the civil society contribution to the TB response;
2) By the end of 2016, maintain and strengthen the TBEC website as a regional platform serving 375 civil society stakeholders working within the TB response;
3) Provide access to TBEC support and representation to civil society stakeholders in at least 75% of countries within the Region by the end of 2016;
4) Strengthen the voice of civil society in all accessible EU and regional forums/ consultations throughout 2016;
5) Manage TBEC’s governance and internal processes for the successfully implementation of this work programme throughout 2016;

These objectives will be achieved via the delivery of key outputs:
- Map civil society stakeholders across the WHO European Region
- Facilitate access to information and resources for capacity building for target groups
- Conduct outreach to civil society across the region with the aim of expanding the network and building relationships with target groups
- Engage with decision-makers on behalf of civil society across the region
- Manage the network effectively to implement the three-year work programme





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Compared to the rest of the world, the WHO European Region has one of the highest proportions of deaths attributable to tobacco. Eurobarometer 429/2015 indicates that almost one third of European citizens currently smoke, including cigarettes, cigars and pipes. The highest rates of tobacco consumption were found in Southern countries such as Greece (38%) and in Bulgaria (35%), while Nordic states have the lowest rates, with only 11% in Sweden and 19% in Finland. The rate of tobacco use differs substantially from one country to another, not only according to people’s level of education, income and occupation but also country of residence. This means that European citizens are facing the harsh reality of health inequalities, not only at national level but also at European level. Within this intricate context, ENSP is determined in 2017 to work at local and national levels to tackle the inequalities that are linked to tobacco use, and more specifically supporting countries that are lagging behind in implementing the TPD 2014/40/EU and WHO FCTC. With activities based on three main pillars: “Research, Prevention and Treatment”, ENSP is determined to: 1. Reduce the demand for tobacco products by tackling illicit trade; 2. Prevent young people from taking up by challenging targeted marketing and encourage tax increase; 3. Contribute to tobacco-related scientific research; 4. Facilitate the provision for tobacco dependence treatment. With exhaustive communication, the 2017 activities will be instrumental to the denormalisation of tobacco in Europe. While it will continue to work at European level with the Parliament, the European Commission and other Brussels-based and international partners to advocate for tobacco control focus policies and activities (f.e. revision of Directive 2011/64/EU on excise duties), ENSP is committed to support EU Member States as well as neighboring countries at national level, providing them with specific tailored support and leadership.
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The TB Europe Coalition (TBEC) is an advocacy network that brings together civil society representatives (individuals and organisations) from across the WHO European Region; in order to strengthen the role of civil society within the region response to tuberculosis (TB), and to increase the political and financial commitment required to effectively control the epidemic in the region.
The year 2017 is the 3rd year of the FPA and another critical year for the fight against tuberculosis (TB) in Europe. The latest evidence continues to affirm that the fight against TB, and particularly drug-resistant TB, is far from won in the region and sustained community advocacy, capacity building, and high-level advocacy are needed to achieve this goal.

Main specific objectives of the programme:
1) Increase understanding of the civil society contribution to TB response across 80% of the Region by the end of 2017;
2) By the end of 2017, maintain and strengthen the TBEC website as a regional platform serving 400 civil society stakeholders working within the TB response;
3) Provide access to TBEC support and representation to civil society stakeholders in at least 80% of countries within the Region by the end of 2017;
4) Strengthen the voice of civil society in all accessible EU, regional and international forums/consultations throughout 2017;
5) Manage TBEC’s governance and internal processes for the successful implementation of this work programme throughout 2017.

These objectives will be achieved via the delivery of key outputs:
- Mapping civil society stakeholders across the region;
- Facilitate access to information and resources for target groups;
- Conduct outreach to civil society across the region with the aim of expanding the network and building relationships with target groups;
- Engage with decision-makers to advocate on behalf of civil society across the region;
- Manage the network effectively to implement the three-year work programme.

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The objective of this project is to support Member States in improving gathering information on rare diseases by implementation of Orphacodes (rare diseases specific codification system). The implementation process will be guided by the "Standard procedure and guide for the coding with Orphacodes" and the "Specification and implementation manual of the Master file" both developed in the frame of the current RD-ACTION Joint Action. The aim of the Orphacode project is to promote the use of the Orphanet nomenclature for implementation into routine coding systems. This enables a standardised and consistent level of information to be shared at European level. Starting with countries that have no systematic implementation of the Orpha codification yet, but that are actively committed already in doing so, this project will provide a sufficient real-world implementation experience to be captured by other countries in the future. Outcomes are: 1. Development of comprehensive rules of use and meta-data documentation for Orphacodes use in clinical health information and other applications that has been developed and rigorously tested in health care systems from EC countries of varying sizes, health information systems, and languages 2. An electronic repository will be created to house this information at the Orphanet website, linking to Orphadata, to include: guidance for use of Orphacodes; teaching and training documents used in health care systems; tools for export of Orphacodes to federated data exploitation at the EC level. 3. Through collaboration of RDCODE partners and invited collaboration with key stakeholders at workshops, effective implementation will be achieved at implementing countries as well as momentum will be developed in other jurisdictions to implement Orphacodes in widespread use to accurately measure the impact of rare diseases in the EC.
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ERN-LUNG is a network of European patients and healthcare providers dedicated to ensuring and promoting excellence in care and research to the benefit of patients affected by rare respiratory diseases. ERN-LUNG’s vision is to be a European knowledge hub for rare respiratory diseases and to decrease morbidity and mortality from rare respiratory diseases in people of all ages. ERN-LUNG is a European Reference Network (ERN), a non-profit, international, professional, patient centred network.
ERN-LUNG is focused on rare respiratory diseases and is made up of nine core networks representing the diversity of diseases and conditions affecting the lungs. The current core networks (sub-thematic areas) are interstitial lung diseases, cystic fibrosis, pulmonary hypertension, primary ciliary dyskinesia, non-CF bronchiectasis, alpha1-antitrypsin deficiency,
mesothelioma, chronic lung allograft dysfunction, and other rare lung diseases (e.g. respiratory malformations, Ondine syndrome). In addition to the sub-thematic groups, ERN-LUNG is also organized in functional committees tackling horizontal topics, affecting all of the current and future core networks of ERN-LUNG. These functional committees are Research and Clinical Trials, Ethical Issues, Registries and Biobanks, Patient Recorded Outcomes and Quality of Life, Quality Management, Guidelines and Best Practice of Care, Communication and Outreach, Cross Border Care, and Professional Training and Continued Medical Education.
In building up on and learning from mature networks of recognized international excellence, ERN-LUNG will add value for patients, healthcare providers, and professionals through dissemination of knowledge, enhancement of general expertise by learning from the best centres in rare respiratory diseases in Europe, and improvement of standards of care, quality of life and prognosis for the whole spectrum of rare pulmonary diseases.
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