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ED News Autumn/Winter 2017

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ED News Autumn/Winter 2017 Belarus Belgique Balgariya Ceská Republika Danmark Deutschland Eesti España France Hellas Hrvatska Ireland Island Israel Italia Kazakhstan Kirgiz Respublikası Kypros Latvija Leituva Luxembourg Makedonija Magyarország Malta Moldova Monaco Nederland Norge Österreich O‘zbekiston Polska Portugal Romania Rossijshaja Federacija Sakartvelo Shqipëri Slovenija Slovensko Srbija Suisse Suomi Sverige EUROPATocikiston Turkiye Ukraïna DONNA United Kingdom Belarus Belgique Balgariya Ceská Republika Danmark Deutschland Eesti España France Hellas Hrvatska Ireland Island Israel Italia Kazakhstan Kirgiz Respublikası Kypros Latvija Leituva LuxembourgThe MakedonijaEuropean Magyarország Breast MaltaCancer Moldova Coalition Monaco Nederland Norge Österreich O‘zbekiston Polska Portugal Romania Rossijshaja Federacija Sakartvelo Shqipëri Slovenija Slovensko Srbija Suisse Suomi Sverige Tocikiston TurkiyeNewsletter Ukraïna United › Autumn/Winter Kingdom Belarus 2017 Belgique Balgariya Ceská Republika Danmark Deutschland Eesti España France Hellas Hrvatska Ireland Island Israel Italia Kazakhstan Kirgiz Respublikası Kypros Latvija Leituva Luxembourg Makedonija Magyarország Malta Moldova Monaco Nederland Norge Österreich O‘zbekiston Polska Portugal Romania Rossijshaja Federacija Sakartvelo Shqipëri Slovenija Slovensko Srbija Suisse Suomi Sverige Tocikiston Turkiye Ukraïna United Kingdom Belarus Belgique Balgariya Ceská Republika Danmark Deutschland Eesti España France Hellas Hrvatska Ireland Island Israel Italia Kazakhstan Kirgiz Respublikası Kypros Latvija Leituva Luxembourg Makedonija Magyarország Malta Moldova Monaco Nederland Norge Österreich O‘zbekiston Polska Portugal Romania Rossijshaja Federacija Sakartvelo Shqipëri Slovenija Slovensko Srbija Suisse Suomi Sverige Tocikiston Turkiye Ukraïna United Kingdom Belarus Belgique Balgariya Ceská Republika Danmark Deutschland Eesti España France Hellas Hrvatska Ireland Island Israel Italia Kazakhstan Kirgiz Respublikası Kypros Latvija Leituva Luxembourg Makedonija Magyarország Malta Moldova Monaco Nederland Norge Österreich O‘zbekiston Polska Portugal Romania Rossijshaja13 Federacijath EUROPA Sakartvelo DONNA Shqipëri Slovenija Slovensko Srbija Suisse Suomi Sverige TocikistonPan-European Turkiye Conference Ukraïna United Kingdom Belarus Belgique Balgariya Ceská RepublikaOctober 28-29, Danmark 2017 Deutschland Eesti España France Hellas Hrvatska Ireland Island Israel Italia Kazakhstan Kirgiz Respublikası Kypros Latvija Leituva Luxembourg Makedonija Magyarország Malta Moldova Monaco Nederland Norge ÖsterreichHighlights ofO‘zbekiston the 13th EUROPA Polska DONNA Portugal Romania Rossijshaja Federacija Sakartvelo Pan-European Shqipëri Conference Slovenija Slovensko Srbija Suisse Suomi Sverige Tocikiston Turkiye Ukraïna Progress on Unitedthe ECIBC – EuropeanKingdom Commission Belarus Initiative Belgique Balgariya Ceská Republika Danmark onDeutschland Breast Cancer Eesti España France Hellas Hrvatska Ireland Island What women need to know about: Israel Italiaresearch, Kazakhstan imaging, surgery Kirgiz and radiotherapy Respublikası Kypros Latvija Leituva Luxembourg Makedonija Best Magyarország practice for complementary Malta medicine Moldova Monaco Nederland Norge Österreich O‘zbekiston Survivorship: Polska support Portugal and empowerment Romania Rossijshaja Federacija Sakartvelo Shqipëri Slovenija Slovensko Srbija Suisse Suomi Sverige Tocikiston Turkiye Ukraïna United KingdomFocus Belarus on Metastatic Belgique Breast Balgariya Cancer – Ceská Republika Danmark Deutschland Eesti EspañaMessages France from advocates Hellas at Hrvatskathe 1st EUROPA Ireland DONNA Island Israel Italia Kazakhstan Kirgiz Respublikası Metastatic Kypros Breast Cancer Latvija Advocacy Leituva Conference Luxembourg Makedonija Magyarország Malta Moldova Monaco Nederland Norge Österreich O‘zbekiston Polska Portugal AnnualRomania advocacy Rossijshaja activities Federacija Sakartvelo Shqipëri Slovenija Slovensko Srbija Suissein member Suomi countries Sverige Tocikiston Turkiye Ukraïna United Kingdom Belarus Belgique Balgariya Ceská Republika Danmark Deutschland Eesti España France Hellas Hrvatska Ireland Island Israel Italia Kazakhstan Kirgiz Respublikası Kypros 10Goals In this issue 1. To promote the dissemination and exchange of factual, up-to-date information on » The Personal is Political ������������������������������������������������������� 1 breast cancer throughout President Roswitha Britz Europe 2. To promote breast awareness » Advocacy in Action �������������������������������������������������������������� 2 3. To emphasise the need for CEO/Executive Director Susan Knox appropriate screening and early detection » Highlights of the 13th EUROPA DONNA 4. To campaign for the provision Pan-European Conference ��������������������������������������������������� 3 of optimum treatment From Policy to Best Practice 5. To ensure provision of quality supportive care throughout and » Making Our Voices Heard: after treatment MBC Advocates Speak Out �������������������������������������������������� 7 6. To advocate appropriate training for health professionals » Making Our Voices Heard Across Europe ��������������������������� 8 7. To acknowledge good practice and promote its development » Strength in Numbers ����������������������������������������������������������� 9 8. To demand regular quality News from member countries assessment of medical equipment » What’s new ����������������������������������������������������������������������� 17 9. To ensure that all women understand fully any proposed treatment options, including » What’s on �������������������������������������������������������������������������� 17 entry into clinical trials and their right to a second opinion » In-box �������������������������������������������������������������������������������� 17 10. To promote the advancement of breast cancer research EUROPADONNANEWS The Personal is Political EUROPA DONNA continues to expand, and I would like to give a very warm welcome to our new country forum in Serbia. 2017 began with our annual Executive Board meeting, where we spent one and a half days planning and deciding on our upcoming projects, events and meetings� We welcomed two new Board Members, Sema Erdem (Turkey) and Biba Dodeva (Macedonia)� During the year a lot of work has been done between the Board and the ED President staff as we try to bring the voice of EUROPA DONNA, the Roswitha Britz advocacy organisation for breast cancer patients in Europe, to all the stakeholders making decisions on our behalf� And we can note that the ED voice is being heard, and is being of ABC4 (the International Consensus Conference for listened to more and more� Advanced Breast Cancer)� In March, during the St Gallen Early Breast Cancer At our Sponsor Meeting during the European Society Congress in Vienna, Austria, I attended the EBC Council of Medical Oncology (ESMO) conference in September in with ED Executive Director Susan Knox and former Board Madrid, Spain, we met many of our sponsors, who were Member Nicole Zernik; there we discussed various strategic very interested in and appreciative of ED’s work� issues regarding the future of the European Breast Cancer In October, Sema Erdem was invited to speak at the Conference (EBCC), followed by further meetings and European School of Oncology (ESO) meeting in Iran� phone conferences� EBCC is an important event as ED is I have been invited to join the ESTRO PAG, the patient an equal partner in this conference alongside two scientific advocacy group of the European Society for Radiotherapy societies, the European Organisation for Research and and Oncology� Treatment of Cancer (EORTC) and the European Society of Breast Cancer Specialists (EUSOMA)� Our partnership in “The ED voice is being heard, and this key scientific congress is important and we will work towards its continued success� is being listened to more and more” Also in Vienna, the Scientific Committee meeting of the Breast International Group (BIG) took place� Researchers We held our 13th ED Pan-European Conference in from all over the world presented ongoing and new studies� Ljubljana, Slovenia, with more than 200 women from 40 ED is cooperating with this group as the only patient voice countries� It was a wonderful conference and it was exciting for breast cancer� Patient advocate input and opinion was to meet so many friends, old and new, women from around sought on several new trials being undertaken and ED the world united by the same concerns and missions� At the expressed interest in providing further input if invited early opening, we remembered our founder, Umberto Veronesi, on in the trial development� A task force will be set up to who inspired many women to establish ED country groups study missed opportunities, and trials that could be run and to advocate for breast cancer care in Europe� We that are not currently being conducted� This will include learned about policy, innovations in treatments, diagnosis non-drug-related trials in early breast cancer, such as and rehabilitation therapies� We gathered a lot of material those investigating surgery, lifestyle, or quality of life� ED to bring home to our local friends and advocates� has asked to be included in the task force as patients are This will be my last editorial as my presidency finishes extremely interested in these areas� at the end of 2017� They were 3 years of hard, rewarding In June, while in Milan, Italy, for the 1st ED Metastatic work – we have accomplished a lot since ED’s beginning, Breast
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