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Workplan 2008
Dear National Representatives,
I would like to inform you about various projects that we will be undertaking this year following decisions made by the ED Executive Board at our first meeting held in January 2008. Our planning for the year is based on our Strategic Review presentation that was discussed in detail at our October G.A: a detailed implementation plan has been drawn up based on priorities and comments that you made at that meeting; I am attaching a projected timeline for that here. One of our main objectives will be the dissemination and distribution of the "Short Guide to the EU Guidelines"; getting it translated so that it will be useful to you in your own countries will be a priority.
EBCC-6 will be held in Berlin 15-19 April 2008. This year the EBCC6 Organising Committee decided to award 5 “European Donna Fellowship Grants” for 5 young women to attend EBCC6; the successful applicants to be decided by ED. Based on the applications received, at our January Board meeting it was decided that these fellowships would go to the following countries: Ireland, Lithuania, Romania, Slovenia and Sweden. As usual, there will be a €2,000 bursary available to each ED forum to enable at least two advocates from each country to attend. If you have not sent in your bursary application form please do so as soon as possible (all requests for bursaries should be proposed by the national representative). In addition to the country bursary, ED offered two additional bursaries for Young Women, which were given on a first come first served basis to Cyprus and Georgia. The "Short Guide" will be placed in each participants conference folder and will be available at our ED stand. The "Short Guide" will also be available in German and French at the ED Stand.
Nathwani Prize: As you all know the nominations for the Nathwani Prize were sent to the ED Head Office and the winner was determined by the ED Executive Board. We received five nominations and would like to thank Belgium, Cyprus, Romania, Switzerland and the UK for their nominations of some very talented artists. It was a difficult decision for the ED Board to make, but after much deliberation it was decided to award the prize to the director of the film Affaire de bain (Busenfreundinnen), nominated by Switzerland.
Advocacy Training Course: the 2007 course was a great success with 42 participants attending from 23 countries. We have funding from the European Union, via a project managed by the European Cancer Network , for the course from 2007-9 inclusive. The course is booked for this year from 7-9 November 2008, at the Palazzo delle Stelline in Milan and each National Rep should begin thinking now of two people to send, preferably breast cancer survivors. The participants each year have given very high ratings to this course so we would urge all the fora to find two attendees to come. There are still some countries that have never sent anyone or have not done so for a number of years; this Course is an important opportunity that should not be missed. The EU “Guidelines on Quality Assurance in Breast Cancer Screening and Diagnosis” are reviewed at this course and the new ED "Short Guide" to these Guidelines will be distributed at the course. The Executive Board has now agreed that if there are vacancies not filled 3 weeks before the course takes place, then a third ED member from an already participating country may be suggested to fill the vacancies.
Publications: In July 2007 we published our “ED News”, and in December 2007 we published our “Lobbying Update”, which has has just been mailed out to everyone. In 2008 a revised Membership brochure will be published as well as the ED News, the Lobbying Update and the Breast Health Passport. In addition, this year the "Short Guide to the EU Guidelines" will be translated into 10 languages to help advocates and the public understand what they need to know about the EU Guidelines. The following languages will be available and we would appreciate hearing from each of you concerning how many copies your forum can use: Italian, French, German, Spanish, Russian, Polish, Greek, Slovenian, Turkish. If there are other languages which you feel should be a priority for translation please let us know.
Trial Committees:
BIG/TransBIG/MINDACT: ED continues to serve on various committees related to these trials. BIG has launched the ALTTO trials (previously known as Aphrodite studies) and Ingrid Koessler is serving as the ED patient representative of the Steering Committee (Committee list available at Head Office). Ingrid is also serving on the Data Monitoring Committee of the FACE trial.
European Health Forum: Ellen Verschuur, Vice President, is now representing us on this forum that is run by the European Commission. Last year this group adopted transparency guidelines and compliance with these will be a requirement for membership in the group. ED has already agreed and adopted procedures that are in compliance with these.
European Commission and Cancer Burden meeting held by the Slovenian Presidency of the EU: ED has provided comments on several EC initiatives: one is a White Paper on nutrition, physical health and obesity; we have also requested participation in a new Workshop on Cancer that is being set up in the spring. As one of the partners of ECN (European Cancer Network), ED will continue to be part of the Working Group to develop EU-level guidelines on accreditation of specialist breast units and this continues to be the priority for the EPGBC. We were therefore invited to participate in the meeting held on cancer by the Slovenian health ministry. Screening guidelines and breast unit accreditation were discussed at the above meeting and members of the Commission praised ED's development of the "Short Guide"; there is recognition that it is through this type of activity that EU Guidelines will get implemented. Cervical screening Guidelines have been published and the Colorectal Guidelines will be completed by next year.
EUROCAN+: The results of the EUROCAN + Project were also presented at the Slovenian meeting and all of ED's comments /requests for advocacy representation etc. were incorporated into the final results
EPGBC/National All Party Groups: ED will continue its work with the EPGBC and the development of the website: [ http://www.epgbc.org/ ]www.epgbc.org, which will be revised and updated on an ongoing basis. ED’s new "Short Guide to the Guidelines" has been published on this website, as it has on our own site. Meetings of the group will continue and we plan to hold our Information Day again this year in October. We would be pleased to hold one meeting of our national all party groups as well. This depends on one of the groups who has not previously hosted such a meeting offering to do so this year. We ask those fora who have national all party groups in their countries to see if this is a possibility and to let us know.
Strategic Plan Implementation: Many of the following relate to Strategic Plan Implementation and are categorised under the headings developed for that exercise. Based on the discussion at our G.A. last October 2007, some activities have been moved up as a priority while others, that appear less urgent, have now been moved to a later date. For instance "providing some new forum support" seemed to be of great importance to the membership so we are trying to combine efforts in this area with the overall priority of "Strengthening ED", which is Step 1 and the highest priority. After the G.A. and discussion with the EPGBC it was agreed that our evaluation of and possible efforts to "intensify presence at the European level" could be deferred until next year.
Step 1: Strengthen ED
Ensure transparency and communicate positioning:
Website: Karen Benn is managing our site and is now updating it with new features that were suggested through the the Strategic Review process. These include publishing an annual report describing our activities and projects, publishing our annual audited financial statements, acknowledging our main sponsors and revising various sections to make them more transparent and easier to understand. The site’s resource guide will be re-arranged to make it easier to locate information on treatment, clinical trials etc. The webcast of Nick Perry's keynote speech at our ED Pan-European conference was available on the site within 10 days – the link can be found from the homepage and we will be setting up a discussion forum on the site so that national representatives can comment on various issues over the course of the year. Our new "Short Guide" has been published and can be downloaded as a PDF directly from our site (on the left hand side of every page of the site). In addition, we would appreciate receiving any thoughts or ideas you may have on how we might improve our site and make it more valuable for advocates. Is there other information you think we should include?
E-newsletter: the first ED e-news was sent out in early February, highlighting information from our printed ED News and Lobbying Update and giving information about future events.
Sponsor meeting: This year we will hold our first meeting for our sponsors at ESMO in September in Stockholm. The purpose of this is to share with our sponsors our projects and programmes for the current year and to inform them of our strategic plans for the future.
Step 1: Strengthen ED and Step 3: Intensify country support( ED national fora training and mentorship):
Increase public awareness of ED across Europe
National Representative Day - ED Day: This is the first key intitiative which the ED Executive Board envisions as both helping to "raise awareness of ED" and also providing "support to the fora, " as was requested at our G.A. in October 2007. It will consist of a oneday training/consultation and mentoring programme, where all National Rrepresentatives and Delegates would come to Brussels (or Milan - to be decided) to receive updates on current ED policies regarding sponsorship, use of logo, guidelines activities, constitution etc. We will also ask former and current ED Executive Board members and nat reps to conduct workshops or one-on-one consultations (perhaps a “fair” type setting with booths you can visit) to enable current National Reps to find out how others have managed their forum activities with regard to fund raising, membership development, media campaigns, sponsorship policies etc. We will consider providing translation facilities if this is a barrier to participation. If you have any suggestions on how you would like to see this developed please let us know.
Following this we hope to hold an Information Day at the European Parliament, with a reception, and so are planning on a date in October - TBD. If we cannot schedule these two events together we may hold the National Rep- ED Day meeting in Milan. The plan is to simultaneously launch a multi-lingual media campaign to be aired in all of our member countries on the same day. This campaign should raise awareness of ED and its central message. It should also highlight our priority today ie. what we want all european women to know: Every woman should have ED's “Short Guide to the Guidelines” so she can understand what she should have access to with regard to early detection, screening and treatment for breast cancer. This concept and ts rollout will all be further developed during the first half of 2008, using an external communications consultant.
Intensify country support
In terms of further supporting our fora, the ED Executive Board agreed that we should launch a "Forum pilot project" for 2008, including recruiting another part time staff member with language skills (hopefully Russian ) to study and understand better the problems facing our less active members. This will enable us to better understand the challenges that some members are facing; e.g. the barriers to their involvement in activities such as advocacy training and attending conferences (even though there are bursaries available), so that we can provide the types of support that they require. At the same time we will begin developing a knowledge-sharing report that each ED forum will be asked to complete for the Head Office, providing us with basic information concerning each forum structure, membership, activities etc so that we can better develop a program that fits your needs.
Step 1: Strengthen ED
Expand Funding sources
An amendment to the ED Constitution has been proposed and will be voted on at our 17 April 2008 General Assembly. If this amendment is passed, ED can become registered in Italy as on “onlus” organisation . This type of non-profit status will permit us to raise funds from the general public through various means eg on line donations, gala events, sale of ED items, etc. Our accountant is preparing a document explaining what will be required of ED as regards financial reporting and other items, as well as the cost to ED of this change in status. After an Executive Board review of this, we will seek an external consultant or staff member to develop and begin implementation of a diversified fundraising plan.
Other Projects:
Working Group on Scientific Enquiry: the ED Executive Board has established this Working Group for 2008. Bettina Borisch, Chair, Astrid Scharpantgen and Sema Erdem, will review the numerous requests ED now receives to participate in research projects, especially those of the EC Research Framework. Firstly, this group will recommend guidelines or a review structure to the Executive Board so that all scientific projects are analysed on the same basis, to determine whether or not they fit with ED's strategic plan and current priorities and to determine if resources are available to carry out such projects. In addition this group will review the possibility of ED's involvement in other female cancers; analysing what the needs are, whether we are positioned to meet those needs, whether we have resources to devote to those needs etc.
New Office Facilities: the contract for our current office at Via Previati expires at the end of 2008. In view of that and our need to expand in terms of office space we will be seeking new offices this year with a view toward moving in the last quarter of 2008.
This is an overview of our various projects and programmes for the upcoming year. This is a challenging and dynamic programme which we hope will fulfill many advocacy needs both nationally and at the European level. You will be receiving more details on each one of these in the near future. Should you wish further information concerning any of them, please do not hesitate to contact us.
I want to express our appreciation to all of you for your dedication and steadfast commitment to our cause; I wish you much success in your advocacy activities this year and I look forward to seeing you all at EBCC-6.
Best regards, Susan
Susan Knox Executive Director EUROPA DONNA - The European Breast Cancer Coalition Via G. Previati 12 20149 Milano Tel: +39 02 8907 9660 Fax: +39 02 8907 9664
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