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Workplan 2007
Dear National Representatives,
I would like to inform you about various projects that we will be undertaking this year following decisions made by the Board at our first meeting held in January. Much of our activity this year will be directed toward implementing the new European Parliament Resolution on Breast cancer and the 4th edition of the EU Guidelines that were published last year.
Our 8th ED Pan European Conference will take place in Amsterdam 27-28 October 2007; the conference will be entitled European breast cancer advocacy: Ensuring Progress on Best Practice and will focus on understanding and implementing the EU Guidelines. Bursaries for each forum to send participants have been increased to 1200 euros for each forum. In addition 5 bursaries of 500 euros each will be available on a first come first serve basis to 5 young ED members( women diagnosed with breast cancer and still under the age of 40). These individuals must be proposed by their national representative so please let us know asap if you would like to propose someone. Daniela Pirisi will send out a bursary form in the near future describing precisely how the bursaries are given and further details concerning the venue etc will be sent to you in the spring.
EBCC-6 will be held in Berlin 15-19 April 2008. Program planning is in progress now, but we ask that you remember to take advantage of early registration fees as soon as the first programmes are distributed. This year there will be 5 fellowships for young advocates ; the eligibility criteria for these will be described in the first conference brochure. Another innovation this year is that all nominations for the Nathwani Prize will come to the ED Head Office and the decision concerning the winner will be determined by the ED Executive Board. We will send more details concerning eligibility for the above in March. There will be a 2,000 euro bursary available to each ED forum to enable at least two advocates from each country to attend and two additional bursaries available to enable at least two young women advocates to attend.(all requests for bursaries should be proposed by the national representative) .
Advocacy Training Course: the 2006 course was a great success with 53 participants from 28 countries. We have applied again for funding from the Commission via ECN and are awaiting confirmation of funding for next year's course. The course will definitley take place 9-11 November 2007 at the Stelline and each forum 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 did not send anyone and this is an important opportunity that should not be missed. The EU guidelines are reviewed at this course and the new booklet(see below)will be distributed.
Hereditary Breast Cancer Survey: Karen Benn has sent this out to everyone- she will follow up and report on this at our conference in Amsterdam.
Publications: In 2006 we published the ED News and our Lobbying Update from 2006 has just been mailed out to everyone. In 2007 a revised version of the "Passport to Breast Health" will be published as well as the News, the Lobbying Update and the Membership brochure. In addition we are preparing an "Easy Guide to the EU Guidelines" to help advocates and the public understand what they need to know about the guidelines.
Website: Karen Benn is managing our site and it is constantly being updated. 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 we should include or are there ways we could make navigation or finding information easier?
Trial Committees: BIG/TransBIG/MINDACT: ED continues to serve on various committees of all these. BIG is currently launching the ALTTO trials (previously known as Aphrodite studies) and Ingrid Koessler will serve as the ED patient representative of the Steering Committee.(Committee list available at Head Office)
European Health Forum: Nicole Zernik represents us on this forum that is conducted by the Eur. Commission. Over the last year this group has been developing transparency guidelines that will be adopted in February 2007 and will then be a requirement for membership in the group.The Board of ED has already agreed that these guidelines are important and that ED will comply with them. Only minor revisions in our operating procedures are required for us to be in compliance. In addition to adopting these guidelines, ED has also developed a Policy Manual covering various procedures and policies concerning coalition activities.
European Commission: ED has also provided its input into the Commission's Health Strategy Consultation that was requested early this year. In this document we pointed out the importance of EU level guidelines in all areas of breast services to ensure setting standards that should be implemented by all countries and the key role of NGO's both in lobbying for these and in getting them implemented.( copies available at Head Office) As one of the partners of ECN(European Cancer Network funded by the Commission), ED will continue to be part of the Working Group to develop EU level guidelines on accreditation of specialist breast units
EPGBC/National All Party Groups: ED will continue its work with the EPGBC and the development of the website: epgbc.org. The new "Easy guide to the guidelines" will be posted on the site and given to all parliamentarians when it is published. We are also currently publishing a pamphlet describing the EPGBC and its activities for distribution to Parliamentarians. Meetings of the group will continue and we hope to have 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.
Research and Strategic Plan: The Board agreed to get bids from outside consultants to do research followed by a strategic plan; this would gather information on our strengths and weaknesses and help us develop a future vision for our organisation. This project will give us insight into how we are viewed by outside groups, the public, our own members and what role we should play in future european advocacy activities ; it will also guide us on how to be more effective on behalf of our constituents. All of you will be involved in this project and we will keep you informed on its progress.
This is an overview of our various projects and programmes for the upcoming year. You will be receiving more details on each one of these in the near future , as well as our audited 2006 Financial report. 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 all your efforts and wish you much success in all your advocacy activities this year.
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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