MISSION:EUROPA DONNA -The EU Breast Cancer Coalition (ED) is an independent, non-profit pan-EU coalition of affiliated grassroots groups whose mission is to ensure that all women have access to accurate information and the highest quality breast cancer screening, diagnosis and treatment. We are widely recognised to be Europe`s breast cancer (BC) advocacy organisation, with 18 years experience advocating for evidence-based best practice breast services.
VISION: ED provides critically important advocacy, education and information with the aim of:
- greatly INCREASING EARLY DETECTION and thereby drastically DECREASING MORTALITY resulting from BC
- bringing QUALITY OF TREATMENT to the highest level for ALL women suffering from BC and thereby DECREASING MORTALITY resulting from the disease
- increasing PREVENTION, by promoting and educating all EU women about healthy lifestyle practices
ED`s general objectives are its Ten Goals, which are based on the aims enshrined in its Constitution. We seek: to promote the dissemination and exchange of factual, up-to-date information on BC throughout Europe; to promote breast awareness; to emphasise the need for appropriate screening and early detection; to campaign for the provision of optimum treatment; to ensure provision of quality supportive care throughout and after treatment; to advocate appropriate training for health professionals; to acknowledge good practice and promote its development; to demand regular quality assessment of medical equipment; to ensure that all women understand fully any proposed treatment options, including entry into clinical trials and their right to a second opinion; to promote the advancement of BC research.
VALUES: ED provides women in member countries with scientifically proven information, evidence-based education and tools, a strong sense of cross-border solidarity and the collective power necessary to bring about positive change on the large-scale while reducing inequalities between countries.
The above are communicated to stakeholders on ED websites, publications and at events.
ED`s general OBJECTIVES are its 10 GOALS, based on the AIMS laid down in its CONSTITUTION (see ED website).
Today, ED works to ensure that women are aware of EU Breast Cancer Resolutions of 2003 and 2006, and works toward the implementation of these resolutions and ensuring that BC services are delivered in line with the EU Guidelines. ED activities therefore address the EU Partnership for Action Against Cancer pillar of identification and promotion of good practice in cancer-related healthcare; ED is a Collaborating Partner on Work Packages 5 and 7.
ED pursues its objectives by developing advocacy programmes at EU and national levels. In 2007 ED undertook a STRATEGIC REVIEW which led to the formulation of a 5-YEAR STRATEGIC PLAN. ED`s 2013 activities will continue that strategy while ED`s leadership finalises a NEW STRATEGIC PLAN.
ED`s current Strategic Plan identified 3 major OPERATIONAL OBJECTIVES which we will continue during transition year 2013: 1) strengthen ED`s capabilities; 2) intensify country support; 3) intensify EU presence. These operational objectives are addressed by ED`s ongoing activities described below. Our CORE ACTIVITIES (vs. project) are those we consider to be ESSENTIAL to ED`s functioning and to the training of our advocates.
EDUCATION Programme (Obj 1-2)
ADVOCACY TRAINING COURSE (Obj 1, 2; CORE)
- this annual, intensive 2.5 day course on scientific aspects, EU Guidelines, Specialist Breast Units (SBU), mammography screening, communication skills training, capacity building, brings New Advocates together to learn Best Practice; EU BREAST CANCER CONFERENCE (EBCC) (All Obj; not in 2013)
- at this biennial conference (co-organized by ED, EORTC, and EUSOMA), 5,000 participants learn about the latest scientific advances on all BC topics; ED PAN-EU CONFERENCE (Obj 1, 2; in 2013, CORE) this 2-day biennial conference responds exclusively to the needs of BC advocates; NATIONAL REPRESENTATIVE DAY (Obj 1, 2; not in 2013)
- Leaders of ED`s National Fora meet for updates on advocacy topics and managing a national non-profit (held when needed).
BREAST HEALTH DAY (All Obj; PROJECT)
- This unique prevention campaign is a yearly educational pan-EU event using media, social networking and digital tools to widely disseminate information concerning the HEALTH DETERMINANTS that strongly influence BC as well as the importance of early detection through mammography screening programmes set up in accordance with EU guidelines.
INFORMATION Programme (All Obj; CORE):
ED ensures that women have access to accurate, up-to-date info on BC issues via its WEBSITES and PUBLICATIONS i.e. NEWSLETTER and BHD NEWS. We publish INFO BOOKLETS on areas such as Clinical Trials and POLICY STATEMENTS on subjects such as genomics; we also issue conference proceedings. New ED member organisations are sent our MEMBERSHIP TOOLKIT. We SURVEY our members on BC topics on an ad-hoc basis; results are reported in ED publications/at events.
A major ED advocacy initiative has been the publication of the SHORT GUIDE TO THE EU GUIDELINES (All Obj but esp 2; CORE). This booklet is crucial to our advocacy efforts at a national level, therefore we have instigated a major translation programme (11 languages so far).
FORUM SUPPORT PROJECT (Obj 2; CORE)
- a committee of ED Board Members, the CEO and Policy Officer work to help ED national groups find solutions to the issues they face.
ADVOCACY PROGRAMME (Obj 1, 3; CORE except for lobbying activities targeted at EU Institutions)
- ED represents the interests of EU women to EU institutions, bringing BC issues to the attention of MEPs and EU Commission both directly and via expert meetings, conferences, Infodays etc. ED provides ongoing input into new health strategies to ensure that BC issues will be addressed and also positions itself to respond to drafts of legislation. ED`s Board and CEO attend many events each year as expert patient advocates.
ED`s 2013 Work Programme is focused on achieving its main organisational objectives: to ensure that all women in Europe have access to state-of-the-art-early detection and treatment of breast cancer, and to ensure that all women are educated concerning breast health. Many of the activities have been programmed repeatedly over numerous years, and consistently updated and improved to best meet organisational objectives.
Specific actions in 2013, following ED`s Strategic Plan and Activities, and building on ED`s work plans of 2008-2012, are described below:
(All activities described here are CORE. Not included is: BREAST HEALTH DAY (project) all are described in the attached Work Plan 2013.)
Activities, Methods and Means:
- Through the ADVOCACY TRAINING COURSE, PAN-EU CONFERENCE, ED PUBLICATIONS and WEBSITES, we will provide simple, clear and scientifically sound information that national Fora can use effectively in their advocacy efforts of disseminating up-to-date breast health info to women and girls in their countries
- Through ADVOCACY TRAINING COURSE, PAN-EU CONFERENCE, ATTENDANCE OF MEETINGS WITH OTHER ORGANISATIONS IN THE FIELD, FORUM SUPPORT PROJECT, ED BOARD MEETINGS and GENERAL ASSEMBLY, we will provide a forum in which members from a broad spectrum of EU countries learn from one another through the exchange of ideas, experiences and best practices
- Through ADVOCACY TRAINING COURSE, PAN-EU CONFERENCE and FORUM SUPPORT PROJECT we will provide experts on important topics who have broad and deep knowledge of breast cancer issues and a successful advocacy track record who will mentor ED members with the aim of overcoming inequalities by helping to bring every country to the level of breast health service described in the EU Guidelines and equalizing EU women`s breast health knowledge
- We will produce and widely disseminate the following documents to pass on information: SHORT GUIDE TO THE EU GUIDELINES, ELECTRONIC NEWS, BREAST HEALTH DAY NEWS, HIGHLIGHTS OF ED`s ADVOCACY LEADER CONFERENCE, ED NEWSLETTER, ED BROCHURE, ANNUAL REPORT, FINANCIAL STATEMENTS
- We will promote healthy ways of life regarding breast cancer prevention through: OUR 2 WEBSITES, BREAST HEALTH DAY NEWS, ED NEWSLETTER, ELECTRONIC NEWS
In carrying out our 2013 Work Programme we expect to: 1) arm ED fora with accurate, up-to-date information and proven strategies to lead their countries in advocating for improved breast health services and directly educating women and girls in their countries about breast health, and 2) directly educate women about the importance of breast cancer screening, early detection, breast cancer issues and services, and breast health. This will lead to the reduction of inequalities in services and public health knowledge and, ultimately, decrease mortality resulting from breast cancer and elevate prevention of the disease.
Target groups: ED will target our 46 member countries with these activities, giving special attention to countries that are experiencing difficulties through our FORUM SUPPORT PROJECT; thus, we aim to bridge inequalities. In cases in which ED`s Forum Support Project aids countries outside of EU Health Programme`s scope, the Project will be treated as NON-CORE and monies from other sources will be allocated.
Ethical aspects: ED respects cultural differences and religious sensibilities that exist among our member countries and works to find common ground and develop programmes that meet their diverse needs.
ED is often invited to participate in projects by outside organisations. All projects are reviewed with extreme care by the CEO and Board to ensure that they meet our ethical standard, e.g. we will not support projects that endeavour to provide or promote a level of service lower than that defined by EU Guidelines to countries with lesser economic resources or different customs.