The European Organisation for Rare Diseases (EURORDIS) is the voice of 30 million people affected by rare diseases throughout Europe.

EURORDIS is a non-governmental patient-driven alliance of organisations and individuals active in the field of rare diseases in Europe.

EURORDIS represents 716 rare disease patient organisations in 63 countries out of which 27 EU member states, covering more than 4000 rare diseases and rare cancers.

EURORDIS advocates for people living with rare diseases, fosters patient engagement in Commission Expert Groups, at the European Medicines Agency and EUnetHTA, provides services to patients such as information, networking and capacity building on all aspects of their condition such as therapeutic developments, access to medicines, social services and healthcare. This is done through tools such as the eurordis.org website, Summer School, Rare Disease Day, RareConnect.org , the survey programme Rare Barometer Voices, Rare Diseases International and the European Conference on Rare Diseases & Orphan Products.

The EURORDIS Specific Grant Agreement 2017 continues the work of SGA 2016 within the overarching Framework Partnership Agreement 2015-2017. This grant's main strategic objectives are to consolidate the rare disease patient community and strengthen the voice of rare disease patients; to actively engage rare disease patient representatives to contribute to the adoption, effective implementation and monitoring of relevant EU legislation/strategies and support their integration at national level; to build capacities and empower rare disease patients advocates, members and volunteers; to sustain human, financial and organisational resources.

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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 European Network to reduce vulnerabilities in health brings together NGOs and academic partners from 23 European countries. Its goal is to contribute to the reduction of EU-wide health inequalities and to improve the response from better equipped health systems so as to deal with vulnerability factors. The Network advocates in favour of better access to healthcare for people facing vulnerabilities through solid quantitative data collection among the partners and advocacy towards European institutions and stakeholders. The members work in different fields of health and social care provision and support a variety of target groups, from the homeless and sex workers to people in poverty and migrants. This creates the potential for rich exchanges on good practices and an opportunity for more effective common advocacy activities across Europe.

2017-last year of a three-year project (2015-2017) - will focus on capitalising on the lessons learned over the three years and enlarging ambitions for future collaboration. This implies designing tools that can be used in the longer run such as a toolkit on best practices and two webinars on data collection and patient empowerment. Dialogue between the members will continue, sharing knowledge about activities and expertise by organizing exchanges between peers and workshops on advocacy and empowerment.

The Network will continue to work on the data collection process in 14 European countries. Medical and social surveys conducted in free clinics receiving people facing vulnerabilities (EU citizens and migrants) enable to identify their health status and social determinants, including obstacles to access to care, in order to inform health policy makers and obtain positive changes. More particularly, the Network’s joint data collection and advocacy on refugees’ health needs will help create a more balanced public discourse within which policy makers can commit to abide by their international obligations towards refugees.

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