Newsletter July 2016


ECCO-PAC Meeting 4 May Brussels

EUROPA DONNA Executive Board member Mona Knotek-Roggenbauer attended the ECCO-PAC meeting held 4 May in Brussels.  Mona represents ED on this committee and will be the patient advocates representative in the Primary Care Session on The Expanding Role of Primary Care in Cancer Management at the ECCO2017 European Cancer Congress that will take place 27-30 January 2017 in Amsterdam.  The ECCO2017 congress is a multidisciplinary evidence-based meeting for all cancer types, addressing all oncology disciplines and related healthcare professions and will take place annually.
For more information on the congress click here


MBC Global Advocacy Alliance Webinar

On 16 May, Susan Knox gave a presentation on EUROPA DONNA’s MBC advocacy work as an example of best practice in MBC advocacy for the MBC Global Alliance webinar that was co-sponsored by the European School of Oncology and the National MBC Alliance in the United States.  Thirty people from 15 countries all over the world were in attendance, including ED Vice President Evi Papadopoulos and members of ED Ireland.


BIG OLYMPIA Steering Committee Meeting

Karen Benn attended the steering committee of the Breast International Group (BIG)’s Olympia trial during ASCO in Chicago on 5 June.


European Commission Initiative on Breast Cancer

ED has been advocating for the development of an accreditation scheme for breast cancer services as well as a new edition of the European Guidelines for quality assurance in breast cancer screening and diagnosis. This European Union’s ECIBC (European Commission Initiative on Breast Cancer) project is now under way and is being coordinated by the European Commission’s Joint Research Centre under the auspices of the Directorate General for Health and Food Safety (DG Santé);  ED’s CEO Susan Knox and Deputy CEO/Head of Policy Karen Benn  attended the 4th meeting of the Guidelines Development Group (GDG) and the Quality Assurance Scheme Development Group (QASDG) respectively that was held 21-23 June.  The 5th meeting is scheduled for 22-23 November followed by a plenary that will take place 24-25 November 2016.  ED is a stakeholder and will be invited to make presentations and to participate in other meetings regarding the development of this project, which is expected to take about 30 months.

For more information on ECIBC click here


White Nights - 2nd St. Petersburg Oncology Forum


ED President, Roswitha Britz gave a presentation on "The work of patient advocates: Europa Donna“ during the 2nd St. Petersburg Oncology Forum on 24 June.   During her presentation she gave a brief history of the Coalition and spoke about the importance of collaboration on research as well as with scientific societies.   For more information on the meeting click here

Pictured from left to right: Oksana Moldovanova, President of ED Russia,  Roswitha Britz, ED President and Tatiana Semiglazova, Head of Department of Innovative Methods of Medical Oncology and Rehabilitation, Doctor of Medical Science, in the Petrov Research Institute of Oncology, St. Petersburg


2nd ESO Masterclass in Cancer Patient Advocacy

The 2nd ESO cancer patient advocacy masterclass was held in Milan 24-26 June.  Susan Knox served on the Steering Committee and also coordinated and conducted a “Leadership” workshop session on the topic of Moving to the next level- managing organisations through growth and change.  Karen Benn gave a presentation on ED’s effective advocacy work at the Parliament through the years in a session on Cancer patients’ influence on EU policy: from the first EU Breast Cancer Resolution (2003) to the ECIBC. Leaders from 26 difference patient advocacy organisations attended.


MBC meeting at the European Parliament


ED Deputy CEO Karen Benn attended a meeting at the European Parliament on 29 June on metastatic breast cancer (MBC).  The meeting was hosted by Emma McClarkin MEP (UK) and was held to raise awareness of MBC and to provide a platform for the patient’s perspective on MBC, along with a review of policy initiatives for people with MBC.  During the meeting, the BVN also presented their film “The book is not yet finished” about living with MBC.

PIctured from left to right;  Ellen Verschuur, Europa Donna Netherlands, Adrienne Veraart, BVN (Netherlands), Emma McClarkin MEP and Karen Benn Deputy CEO Europa Donna.


Breast Health Day 2016 Campaign Launched


EUROPA DONNA – The European Breast Cancer Coalition holds Breast Health Day on15 October to disseminate information about breast health and to raise awareness of prevention and early detection of breast cancer among women and girls across Europe.  This year’s campaign will encourage women and girls to choose a “Healthy Lifestyle for Breast Health!” and will be encouraged to send in pictures of themselves doing something healthy to be shared on 15 October.  

For more details see: or follow us on:

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