HAI Europe contributes to European Union (EU) policy that promotes universal and equitable access to affordable needed medicines of assured quality and policy and practice that ensures those medicines are used rationally. HAI Europe’s work plan 2015-2017 is dedicated to identify, monitor and support EU policies that provide a response to persistent shortfalls in access to medicines and that are aligned with HAI’s overarching goals on Access to Needed Medicines, Rational Use of Medicines and Democratisation of Medicines Policy in Europe. HAI will work towards these goals through research, evidence-based policy analysis and intervention, training and information sharing. As a result, HAI will advocate for citizen-centred public health policies that address health challenges in the EU and health inequity both within and between EU member states. HAI Europe’s multi-annual programme addresses the objectives of the Third Health Programme and contributes to EU added-value by supporting medicines policies that have the potential to maximise the impact of policy intervention at a regional level, and thereby contributes to better and safer healthcare for EU citizens. HAI Europe is a non-profit, independent NGO and maintains a membership network of consumers, healthcare providers, academics and public interest groups working on pharmaceutical policy issues in Europe. The growing European regional network is represented in over half of EU Member States. The HAI Europe office coordinates actions with the HAI Europe Members Association, and integrates its work in collaboration with other European civil society organisations.
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The Association of European Cancer Leagues (ECL) is an NGO leading on cancer control actions at the European level since 1980. Represented by members in EU and non-EU countries, cancer leagues are the main resource for the public for cancer control information and services. As the only network exclusively for cancer leagues, ECL provides a unique platform for cancer leagues to share knowledge and experience. Prior to receiving operational grant funding, the running of ECL had been financed mainly by membership fees. The addition of EU co-financing since 2015 has allowed ECL to implement activities more effectively in line with our multi-annual strategy, leading to the progressive increase in activities across all 5 of our strategic goals, providing considerable EU added-value in the process. EU co-funding has enabled ECL to increase our work in cancer prevention, especially the promotion of the European Code Against Cancer (ECAC). This has led to the design of new communication tools to raise awareness amongst the general public; the creation of a youth ambassadors programme to improve dissemination amongst young people; and enhanced networking opportunities for leagues allowing them to share best practice and collaborate more efficiently. In 2017, ECL will continue to disseminate the ECAC, making efforts to measure and assess the impact of these activities. ECL will increase efforts to have explicit references to the ECAC in updated National Cancer Control Plans, and will place greater emphasis on the role of cancer leagues in promoting organised cancer screening programmes. ECL will continue its leading role in tobacco control by supporting the 2017 European Conference on Tobacco or Health (ECToH). ECL shall also launch a new task force on the crucial issue of equal access to medicines. This will complement ECL's ongoing secretariat work on behalf of the MEPs Against Cancer interest group of the European Parliament, and the Patient Support Working Group of ECL.
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The Joint Action Towards the European Health Data Space (TEHDAS) is a consortium of 26 EU MS and other countries that work to improve cross-border use of health data for the benefit of citizens’ health, for public health, research and innovation.TEHDAS builds on earlier EU actions fostering the digital transformation of European health systems. It contributes to responding to the Member States’ call at the October 2020 European Council to set up a European Health Data Space and proposed by the von der Leyen Commission.The Joint Action helps Members States and the Commission in developing and promoting concepts for sharing of data so that in the future Europe, citizens, communities and companies benefit from a protected and seamless access to health data regardless where it is stored.TEHDAS will suggest options for an operational framework and governance in order to overcome legal and technical differences between countries. TEHDAS is grounded on the principles of transparency, trust and citizen empowerment. It will work on technical and semantic challenges, propose services, architectural and infrastructural elements required in the European Health Data Space.Citizens increasingly manage their data which requires a better understanding and a European perspective. To maintain trust in fair and secure data sharing, TEHDAS will suggest strengthened governance mechanisms for cross-sector use of health data in common data spaces at the EU and Member State levels.TEHDAS will reach out and engage with many types of stakeholders to reflect their needs and expectations, explore views on economic issues, and suggest concrete ways to integrate results into the future the European Health Data Space.
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This is the VASCERN SGA Proposal for 2017, under the ERN Framework Partnership Agreement (FPA) 2017-2021.
The ERN is coordinated by the ERN Network Coordinator, Pr. Guillaume JONDEAU - AP-HP, H�pital Bichat-Claude
Bernard, CRMR Marfan Diseases and related disorders (Centre de R�f�rence Maladies Rares Syndrome de Marfan et
apparent�s).
VASCERN aims to facilitate and improve diagnosis, treatment and care for ALL patients suffering from Rare
Multisystemic Vascular Diseases, thus enhancing access to care, and improving quantity and quality of life of these patients.
Networking, sharing and spreading our expertise, promoting best practices, guidelines and clinical outcomes, patient empowerment, improving knowledge through clinical and basic research are among our objectives.
The European Reference Network on Rare Multisystemic Vascular Diseases gathers European highly specialized
multidisciplinary Healthcare Providers (HCPs) in this thematic area of expertise. The Network includes 5 Rare
Diseases Working Groups: Heritable Thoracic Aortic Diseases (HTAD-WG), HHT-WG, Medium Sized Arteries (vascular Ehlers Danlos) (MSA-WG) ,Pediatric and Primary Lymphedemas (PPL-WG) and Vascular Anomalies (VASCA-WG). The specific Patient Group enables Patient representatives to work on common issues and to be involved in all activities. In addition, several Thematic Working Groups are established to better tackle transversal issues which are planned in the Multiannual Work Programme on: eHealth, Training & Education, Patient Registry, Ethics, and Communication / Dissemination.
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This is the VASCERN Specific Grant Agreement Proposal for the second year of operation of the ERN (from March 2018 to February 2019), under the VASCERN Framework Partnership Agreement (FPA) 2017-2021.
VASCERN Network Coordinator is Prof. Guillaume JONDEAU, Cardiologist at the Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpital Bichat-Claude Bernard, CRMR (Center of Reference) Marfan Diseases and related disorders.
VASCERN aims to facilitate and improve diagnosis, treatment and care for all patients suffering from rare multisystemic vascular diseases.
The European Reference Network on rare multisystemic vascular diseases (VASCERN) gathers European highly specialized multidisciplinary Healthcare Providers (HCPs) in this thematic area of expertise.
VASCERN includes 5 Rare Diseases Working Groups (RDWGs):
- Heritable Thoracic Aortic Diseases (HTAD-WG)
- Hereditary Haemorrhagic Telangiectasia (HHT-WG)
- Medium Sized Arteries (vascular Ehlers Danlos) (MSA-WG)
- Pediatric and Primary Lymphedemas (PPL-WG)
- Vascular Anomalies (VASCA-WG)
The specific VASCERN Patient Group (ePAG) enables Patient representatives to work on common issues and to be
involved in all activities.
In addition, several transversal Working Groups work on: eHealth, Training & Education, Patient Registry,
Ethics, Communication / Dissemination.
Our Action Plan for this second year will enable VASCERN to carry on with its work and reinforce its activities with regard to various Work Packages such as: Case discussion on the Clinical Patient Management System (CPMS), Patient Pathways, Clinical Guidelines / recommendations, Mobile Application (improvements), Patient Registry & clinical outcome measures, Communication (improvements), Training & Education, Pills of Knowledge, Clinical trials & research.
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