ANNUAL REPORT

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1 ANNUAL REPORT

2 I. CREATION OF ECC II. The European COPD Coalition is not-for-profit association created in February 2011; its office opened in September 2011, in Brussels. The founding members of the ECC are the European Respiratory Society (ERS), GlaxoSmithKline (GSK), Pfizer and Boehringer Ingelheim. The European Coalition for COPD is created to address some of the perceived unmet needs existing across Europe. The prevalence of the disease is increasing yet diagnosis is poorly made and treatment changes, both pharmacological and non-pharmacological, are not always being applied as the disease worsened or changed. The parties feel that there is a need for political action to help address these issues and others. The Coalition is a non-commercial, politically independent and non-denominational association of (i) patient and professional organisations relating to chronic obstructive pulmonary diseases (COPD) operating on a European level, (ii) interested members of the life sciences, medical equipment, ICT and/or patient care industry that develop products and/or services intended to benefit patients with COPD, as well as (iii) individuals, groups, entities, organisations or communities from the medical, academic, scientific and political community. The legal articles of association are drafted to ensure a mutually agreeable legal framework to give all parties (current and future) the security and governance to be able to work together. VISION, MISSION AND STRATEGIC GOALS The Coalition focuses on (i) raising awareness on COPD at the European level and on (ii) developing and implementing a comprehensive EU public health policy on COPD. 1. Vision The European COPD Coalition envisions a future where patients living with COPD in Europe are relieved from the burden of the disease through high quality care, and are able to lead more productive lives both in the work place and with their families; care-givers of people living with COPD are better enabled to support patients; policy makers are committed to the implementation of progamme and plans to address the issue of COPD; there is a harmonised research framework across Europe to improve our understanding of the disease and its translation into patient s benefits. 2. Mission The Coalition's mission is to conquer the myths and misunderstandings around COPD and to coordinate the actions of multiple stakeholders to improve COPD prevention, diagnosis and the quality and provision of COPD care across Europe. 3. Strategic goals In line with its vision and mission, the ECC strategic goals are to raise awareness of the disease and to ensure that COPD is part of the EU policy makers political agenda. These will be undertaken taking into account existing EU policies or debates for future policies, and by proactively advocating for COPD frameworks together with all parties involved at EU level in designing, adopting and implementing such frameworks. ECC shall focus its advocacy work towards the policy makers working at the EU level (all institutions), other health stakeholders, and healthcare professionals. 2

3 To raise awareness and position COPD on the political agenda, ECC will: - proactively express its positions on files related to COPD and shares its view with EU decision makers and the media to advocate for further political on COPD; - organise events, meetings, and educational sessions to position COPD on the EU political agenda; - run campaigns; - supports third parties initiatives on COPD; - be present at conferences and congresses; - work closely with the media. III. KEY ACHIEVEMENTS FOR 2011 During 2011, ECC developed a number of actions to help position both the association and the disease. 1. Alliance building and membership It is essential for the success of the Coalition that ECC develops its basis with partners that have an interest in policy making for COPD and work towards the benefits of COPD patients and their families. ECC aims to be the platform gathering all key players in the fight against COPD which includes patients, healthcare professionals, life science industry companies, or medical devices and IT (ehealth) representatives and care givers. For this purpose, during the last trimester of 2011, ECC met or made contact with major European associations and some national representatives in the fight against COPD and will carry this work forward in ECC also applied to be a member of the European Chronic Disease Alliance (ECDA), the Non-Communicable Disease (NCD) Alliance and the European Public Health Alliance (EPHA). 2. Raising awareness among EU Policy makers a) Initiate policy influencing During the autumn 2011, ECC was able to secure the firm commitment in the fight against COPD of MEPs Catherine Stihler and Glenis Willmott, who shared ECC s first press release on the occasion of World COPD Day (see below) to all MEPs as first action of support. The press release focused on presenting the disease and on calling for action from the MEPs. ECC also met with key decision makers in DG SANCO and DG Research and Innovation on two occasions. During this same period, the ECC secretariat also started the preparations for the ECC official launch in the European Parliament together with the European Public Health Alliance (EPHA), its partner for public affairs. b) Awareness raising: World COPD Day 2011 ECC took the opportunity of World COPD Day, on 16 November to develop its first communication campaign, with one simple question: what is COPD? ECC drafted and published its position statement 1 COPD, a deadly disease that needs political attention now which was sent to all Members of the European Parliament (MEPs), staff members of Directorate General for Health and Consumers (DG SANCO) of the European Commission, the press, and health EU stakeholders on the day. This was accompanied by a visual campaign with big posters located at EU quarters metro stations (Schuman, Luxembourg, Maelbeek) in Brussels the campaign started on the World 1 content/uploads/2011/11/position-statement- ECC-10Nov11.pdf 3

4 COPD Day and got a lot of attention 2. The locations were chosen so that EU civil servants using the metro would see it and understand that COPD is a serious condition that requires action now. The ECC secretariat coordinated and managed the development of 3 one-minute videos to be broadcasted on CNBC Europe, during one week, at peek business hours. The target were the policy makers and the key message was What is COPD with scientific information, on the financial costs of the disease and the political actions it requires. There were 4 interviewees, including MEP Glenis Willmott. The videos are available DCoalit?feature=mhee. IV. PLANS FOR 2012 In 2012, ECC plans to: - Extend its membership, in particular with the inclusion of European and International associations; - Organise a conference in relation to the EU reflection on chronic diseases; - Launch and promote its Call to Action on COPD and actively collect signatures of support; - Take an active part in World Spirometry Day in June/July; - Further develop its policy influencing by reaching Member States representatives and expanding its basis of support from MEPs and European Commission officials; - Closely monitor developments around the Tobacco Products Directive and take adequate actions when necessary in partnership with dedicated tobacco control societies; - Grow its partnerships with larger alliances, such as the European Chronic Disease Alliance. V. MANAGEMENT, GOVERNANCE AND ADMINISTRATION VI. a) Governance and Transparency ECC core documents have been created to complement the articles of associations, the Financial and Ethical rules. These were posted on the ECC website. In the same line, Catherine Hartmann added ECC to the EU Transparency Register. Two formal meetings of the Committee (governing body of ECC) were held during the period, and one informal meeting took place during the ERS annual congress in Amsterdam. An extra-ordinary General meeting took place in November to adopt the 2011 and 2012 budgets. b) Administration & Management The ECC is now located in the ERS Brussels office. An accountant, auditor, website and supplier, and other service providers were appointed to work with ECC. Processes were put in place to perform the general management of the association, under the leadership of the ECC Committee. FINANCES Unrestricted grants 3 from GlaxoSmithKline (GSK), Pfizer and Boehringer Ingelheim were received during These grants finance our portfolio of projects, in line with our Ethical Rules for partnerships, a framework for working with funding partners, which ensures ECC s relationship with sustainable funding partners meets the highest standards of transparency and independence. In the medium to long term, the goal is to secure more finances through: - Increasing the number of life science companies as members of ECC; - Diversification of sources of funds: ECC will consider applying for EU funds. 2 Photos are available on the ECC website 3 A balance sheet is available upon request 4

5 Together against COPD DRAFTED BY CATHERINE HARTMANN EUROPEAN COPD COALTION JUNE 2012 ECC European COPD Coalition, International non-profit making association Rue de Trèves 49-51, Box 13, B Brussels, Belgium Register for Legal Entities Brussels 5

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