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    Profile of registrant

EUROPA DONNA-The European Breast Cancer Coalition

Identification number in the register: 13080161140-33
Registration date: 13/02/2009 14:35:05

The information on this entity was last modified on: 23/04/2015 14:05:18
The date of the last annual update was: 21/04/2015 11:55:48
Next update due latest on: 21/04/2016

    Registrant : Organisation or self-employed individual

EUROPA DONNA-The European Breast Cancer Coalition

ED

Non Profit

    Section of registration

III - Non-governmental organisations

Non-governmental organisations, platforms and networks and similar

    Contact details

Piazza Amendola, 3
Milan 20149
ITALY

(+39) 0236592280

    Person with legal responsibility

Ms  Susan Knox

Executive Director

    Person in charge of EU relations

Ms  Karen Benn

Head of Policy/Public Affairs

    Goals / remit

EUROPA DONNA – The European Breast Cancer Coalition Mission Statement:

EUROPA DONNA, the European Breast Cancer Coalition, 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.


EUROPA DONNA TEN GOALS:
1. To promote the dissemination and exchange of factual, up-to-date information on breast cancer throughout Europe

2. To promote breast awareness

3. To emphasise the need for appropriate screening and early detection

4. To campaign for the provision of optimum treatment

5. To ensure provision of quality supportive care throughout and after treatment

6. To advocate appropriate training for health professionals

7. To acknowledge good practice and promote its development

8. To demand regular quality assessment of medical equipment

9. To ensure that all women understand fully any proposed treatment options, including entry into clinical trials and their right to a second opinion

10. To promote the advancement of breast cancer research

EUROPA DONNA Key Activities:

EUROPA DONNA is involved in the following educational and information activities:

• Jointly organises with EUSOMA and the EORTC the European Breast Cancer Conference that is held every two years. This Conference brings together 5,000 doctors, researchers, health professionals and advocates from all over the world.

• Organises a major biennial Pan-European Breast Cancer Conference and brings together over 200 breast cancer advocates from throughout Europe.

• EUROPA DONNA General Assembly meetings, which allow for all our Fora to share information and decide on important issues concerning the Coalition as well as National Representative Training sessions for leaders of our member country groups.

• Conducts Annual European Breast Cancer Advocacy Training Course- a two day training course where our members learn more about how to initiate and carry out advocacy programs in their own countries as well as at the European level.

• Launched Breast Health Day on 15 October 2008 with a media event to begin awareness campaign for prevention and early detection

• Launched a public service announcement to 40 member countries in local language to raise awareness of each woman’s right to receive services in accordance with the “EU guidelines for quality assurance in breast cancer screening and diagnosis” Published “Short Guide” to these guidelines with translation into 14 languages to use in national implementation projects.

• Produces various publications and website material concerning breast cancer on www. europadonna.org and www.breasthealthday.org

European

    Specific activities covered by the Register

Our Head of Policy and Public Affairs, Karen Benn, has been working with members of the European Parliament to draft a new “Written Declaration on the fight against breast cancer in the EU”. The Written Declaration, due to launch on April 28th, will confirm the European Parliament Resolutions of 2003 and 2006; it will address the needs of women with MBC, the implementation of specialist breast units by 2016, and the need to complete the accreditation protocol for breast cancer services. The launch will take place in the first quarter of 2015. This follows a roundtable meeting in February at the European Parliament where we requested that both the new Written Declaration and the new European Commission Initiative on Breast Cancer (ECIBC) include specific reference and description of necessary services and support for Metastatic Breast Cancer.

The ED Head Office carries out programmes in three main areas: education, information and advocacy. Our 47 European member countries are targeted with the following:

EDUCATION Programme: To most effectively fight breast cancer, ED seeks to encourage open communication and knowledge-sharing. To this end, we develop educational projects and organise conferences. ADVOCACY TRAINING COURSE—this annual, intensive 2.5 day course on scientific aspects, EU Guidelines, Specialist Breast Units, mammography screening, communication skills training, capacity building, brings New Advocates together to learn best practice; EUROPEAN BREAST CANCER CONFERENCE (EBCC)—at this biennial conference (co-organized by ED, EORTC, & EUSOMA), 5,000 participants learn about the latest scientific advances on all breast cancer topics; ED PAN-EUROPEAN CONFERENCE this 2-day biennial conference responds exclusively to the needs of breast cancer advocates; ADVOCACY LEADER CONFERENCE—Leaders of ED’s National Fora meet for updates on advocacy topics and managing a national non-profit (held when needed).

INFORMATION Programme: ED ensures that women have access to accurate, up-to-date information on breast cancer issues via its WEBSITES (www.europadonna.org and www.breasthealthday.org), SOCIAL MEDIA and PUBLICATIONS e.g. Newsletter and Breast Health Day News. We publish INFORMATION BOOKLETS on areas such as Understanding Breast Cancer Research and POLICY STATEMENTS on subjects such as genomics; we also issue conference proceedings. New ED member organisations are sent our MEMBERSHIP TOOLKIT. We SURVEY our members on breast cancer topics on an ad-hoc basis; results are reported in ED publications/at events.

A major ED advocacy initiative has been the publication of the SHORT GUIDE TO THE EU GUIDELINES. This booklet is crucial to our advocacy efforts at a national level, therefore we have instigated a major translation programme (17 languages so far).

ADVOCACY Programme: ED represents the interests of European women to EU institutions, bringing breast cancer issues and women’s/patients’ concerns to the attention of MEPs and European Commission both directly and via expert meetings, conferences, Infodays etc. ED provides on-going input into new health strategy initiatives to ensure that breast cancer issues will be addressed and also positions itself to respond to drafts of legislation. ED’s Board and Executive Director attend many events each year as expert patient advocates.


 

No

No

EUROPA DONNA is an alternate member of the Expert Group on Cancer Control.

No

No

Breast Cancer, cancer control plans, implementation of the European Union Guidelines for quality assurance in breast cancer screening and diagnosis at the national level. In particular, establishing an EU process for accreditation of Specialist Breast Units that will be applied Europe wide.

    Number of persons involved in the activities described in the box above

75%: 5  

5

3.8

EUROPA DONNA has a part-time staff of five headed by its Executive Director/CEO Susan Knox, a two-time breast cancer survivor.

    Persons accredited for access to European Parliament premises

No accredited persons

    Fields of interest

  • Employment and Social Affairs
  • Public Health
  • Research and Technology
  • Trans-European Networks

    Membership and affiliation

119,550

ED Albania(5),
ED Armenia (5)
ED Austria(50),
ED Belarus(15),
ED Belgium(500),
ED Bulgaria(80),
ED Croatia(3200),
ED Cyprus(5000),
ED Czech Republic(4300),
ED Denmark(900),
ED Estonia(68),
ED Finland(900),
ED France(2500),
ED Georgia(150),
ED Germany(5),
ED Greece(250),
ED Hungry(30),
ED Iceland(45),
ED Ireland(270),
ED Israel(20),
ED Italy(20000),
ED Kazakhstan(5),
ED Kyrgyzstan(12),
ED Latvia(200),
ED Lithuania(2000),
ED Luxembourg(350),
ED Macedonia(3031),
ED Malta(85),
ED Moldova(5),
ED Monaco(25),
ED Netherlands(7000),
ED Norway(15000),
ED Poland(160),
ED Portugal(150),
ED Romania(125),
ED Russia(5),
ED Serbia(5),
ED Slovakia(5),
ED Slovenia(3014),
ED Spain(37000),
ED Sweden(11500),
ED Switzerland(325),
ED Tajikistan(30),
ED Turkey(400),
ED UK(100),
ED Ukraine(720),
ED Uzbekistan(5)

  • AUSTRIA
  • BELGIUM
  • BULGARIA
  • CROATIA
  • CYPRUS
  • CZECH REPUBLIC
  • DENMARK
  • ESTONIA
  • FINLAND
  • FRANCE
  • GERMANY
  • GREECE
  • HUNGARY
  • IRELAND
  • ITALY
  • LATVIA
  • LITHUANIA
  • LUXEMBOURG
  • MALTA
  • NETHERLANDS
  • POLAND
  • PORTUGAL
  • ROMANIA
  • SLOVAKIA
  • SLOVENIA
  • SPAIN
  • SWEDEN
  • UNITED KINGDOM
  • ALBANIA
  • ARMENIA
  • BELARUS
  • GEORGIA
  • ICELAND
  • ISRAEL
  • KAZAKHSTAN
  • KYRGYZSTAN
  • MACEDONIA, FORMER YUGOSLAV REPUBLIC OF
  • MOLDOVA, REPUBLIC OF
  • MONACO
  • NORWAY
  • RUSSIA, FEDERATION OF
  • SERBIA
  • SWITZERLAND
  • TAJIKISTAN
  • TURKEY
  • UKRAINE
  • UZBEKISTAN

EUROPEAN PATIENT FORUM
EUROPEAN PUBLIC HEALTH ALLIANCE
ECCO-EUROPEAN CANCER ORGANISATION
EUROPEAN CANCER NETWORK

    Financial data

01/2014  -  12/2014

600,000 € - 699,999 €

656,916 €

253,677 €

0 €

Not applicable

253,677 €

European Union in the framework of the Health Programme

0 €

0 €

403,239 €

0 €

15,250 €

381,527 €

6,462 €

Europa Donna publishes audited financial statements as well as annual reports on our website (http://www.europadonna.org) in accordance with the transparency guidelines established by the European Health Forum.

    Code of conduct

By its registration the organisation has signed the Transparency Register Code of Conduct.