EUROPA DONNA: Raising awareness of breast cancer and supporting European women affected by the disease

Intro text: 

EUROPA DONNA - the European Breast Cancer Coalition – is a non-profit breast cancer organisation, gathering members throughout Europe. This organisation plays a key role in advocating on behalf of European patients, to make sure that all women have equal access to accurate information on breast cancer and to state-of-the-art services and treatments.

Interview with Susan Knox, Executive Director of EUROPA DONNA

BIG: What is Europa Donna?

Content: 

Susan: The European Breast Cancer Coalition (ED), is an independent non-profit organisation whose members are affiliated groups from countries throughout Europe. The Coalition works to raise awareness of breast cancer and to mobilise the support of European women in pressing for improved breast cancer education, appropriate screening, optimal treatment and care and increased funding for research. EUROPA DONNA represents the interests of European women regarding breast cancer to local and national authorities as well as to institutions of the European Union.

Editor: 

What are the most important benefits of an organisation like ED for patients?

First of all we are advocating on behalf of patients to ensure that all women in Europe have access to accurate and up-to-date information about breast cancer. Our role is also to ensure that they all have equal access to state of the art services for early detection, diagnosis, treatment and follow-up for this disease. This means that the women affected by breast cancer can rely on the information and education provided by our organisation. The strength of ED really lies in uniting women of many different countries and cultures to achieve common goals based on scientific evidence.
 
Through our information, education and policy/public affairs activities, patients now have access to up-to-date accurate information and are in a position to take informed decisions about their care and treatment.

“Europa Donna represents the interests of European women affected by breast cancer to local and national authorities as well as to institutions in the European Union”

What do you think is important about breast cancer research, from a patient’s perspective?

Content: 

Moving research forward is essential to breast cancer advocacy and to patients. The hope for patients in the future rests in the hands of researchers and research groups to develop new and better treatments for the many types of breast cancers that exist. The advances of the last 30 years are evidence of this –starting with the development of endocrine therapy.

Editor: 

Research represents the hope, the future, and the real possibility of eradicating this disease once and for all. Given the significant increase in incidence across the world highlighted in the recent report from the International Agency for Research in Cancer (IARC), we need research of all types to understand how the disease develops, why it is increasing and how to stop it. ED considers our collaboration on research projects to be one of our most important strategic pillars for the next 5-10 years.

"Through our information, education and policy/public affairs activities, patients now have access to up-to-date accurate information and are in a position to take informed decisions about their care and treatment"

Editor: 

How do you see advocacy evolving? What are the priorities of ED for the next few years? What are the upcoming challenges?

Advocacy must evolve as needs and issues change. Some priorities remain the same, such as – among others – establishing specialist breast units in all countries according to the EU Guidelines for quality assurance in breast cancer screening and diagnosis, developing national breast cancer registries, and furthering breast cancer research. In addition, we have identified new priorities. Among them, breast cancer prevention was identified as a key concern and led to the launch of our Breast Health Day campaign in 2008. Now all of our ED countries agree that this is a priority for ED moving forward. The Breast Health Day is held annually on 15 October and provides women and girls with information about lifestyle changes that can help prevent a diagnosis of breast cancer in the future. The latest priority added is survivorship. This is a new area; women now live longer after being treated for breast cancer but they have multiple needs and concerns that still need to be addressed, possibly for many years, such as fatigue, psychosocial support, help with work related issues, etc.

Why is it important for ED to collaborate with associations such as BIG?

Our collaboration with BIG is essential because it provides a way for us to understand the current research that is being undertaken, to provide input on clinical trial protocols and materials that may be helpful to patients and in trials. We hope in this way to contribute to helping ensure that trials are run more smoothly, recruit more easily and with better patient understanding and, as a result, with  more success and speed in bringing new treatments to patients. Furthermore, this collaboration enables us to educate our advocates in all of our countries so that they may develop research collaborations at the national level, increasing exponentially our ability to provide patient input into breast cancer research. We attend BIG’s Scientific Meeting and serve on the Steering Committees of the MINDACT trial, the OLYMPIA trial and the AURORA research programme on metastatic breast cancer.
Our aim is to make our contribution to ensuring that state of the art research is conducted. Research that will ultimately provide the much needed cures for this disease.

DO YOU COLLABORATE WITH OTHER PATIENT ADVOCACY ORGANISATIONS IN THE WORLD?

Content: 

We provide information and guidance to breast cancer groups that are setting up especially in South America, in the Middle East, and in Africa. The realities in each country are different, but there are also many common aspects between them. Many members of ED come from countries that are still at the beginning of the advocacy journey. We frequently send ED Board members directly to countries to help them better understand the advocacy work.

Editor: 

We also invite advocates from other countries to attend our Pan-European Conferences. In the area of prevention, each year we offer all our materials for the Breast Health Day to all groups interested, everywhere in the world. This is an area we can all agree on, and information programs are not expensive to implement. We also have ongoing collaborations with other cancer patient organisations across Europe. In this way we are able to network and share significant ideas and methods that can help to improve the effectiveness of our organisations.

2014 marked the 20th anniversary of ED. What has changed in two decades of patient advocacy work?

In the early 1990’s there was no European breast cancer advocacy movement or organisation, so a great deal has changed since the formation of ED in 1994! We started with groups in 12 countries and now have member groups in 47 countries. Right after its creation, the ED Board agreed on 10 main goals and made a commitment that all messages and activities that would be undertaken by the coalition to achieve these goals needed to be evidence-based. Immediately we began collaborating with experts and specialist groups like EUSOMA1, EORTC2, IARC3, and later BIG, to develop information, education, and policy programmes that would advocate for the provision of state of the art breast services needed by women across Europe. We have made a lot of progress in 20 years, particularly in the implementation of population-based mammography screening programmes and specialist breast units.You can see a summary of our advocacy work in our 20 year brochure on our website www.europadonna.org.

“Our aim is to make our contribution to ensuring that state of the art research is conducted. Research that will ultimately provide the much needed cures for this disease”

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Intro text: 

Europa Donna information and education:

Europa Donna provides information that is evidence-based in various publications, newsletters, websites, and social networking sites:

- www.europadonna.org
20 years Brochure '20 Years of advocacing on behalf of the women of Europe'
- www.breasthealthday.org
- Short guide to “European Guidelines for quality assurance in breast cancer…” in 17 languages, available here
- Pan-European Conference for breast cancer advocates and survivors (17-18 October 2015, Paris)
- EBCC
- Other meetings…
- Booklets on research: “Breast Cancer and Clinical Trials", “The Advocates Guide to Understanding Breast Cancer Research”, “Exploring the role of advocates in breast cancer research”

Europa Donna policy & public affairs:

ED is constantly engaged in bringing up positive policy change at the European level. Indeed, ED has held numerous European Parliament Information meetings and exhibits resulting in two European Parliament Resolutions on breast cancer, in 2003 and 2006, and in the Written Declaration on the Fight Against Breast Cancer in the EU in 2010.