mamazone - women and research against breast cancer
| mamazone - women and research against breast cancer eV | |
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| legal form | Volunteer Association |
| founding | November 25, 1999 |
| Seat | augsburg |
| purpose | Inform, support and empower women with breast cancer, improve the quality of diagnostics, therapy and aftercare, observe, comment and support research. |
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| Members | approx. 2000 (as of January 2016)
32 doctors and researchers on the Scientific Advisory Board |
| Website | www.mamazone.de |
mamazone - Women and Research Against Breast Cancer eV is a breast cancer initiative based in Augsburg . The non-profit association was founded on November 25, 1999. It goes back to the initiative of the journalist and breast cancer patient Ursula Goldmann-Posch .
The name “mamazone” is a made-up word that consists of a mixture of the words “ Amazone ” (warrior women from the Greek myths) and “Mamma” (medical term for the mammary gland ).
The association is committed to quality-assured early detection and the application of modern, scientifically sound diagnostic and therapeutic options in clinics and practices, and the further development of research into breast cancer . The aim is to increase the chances of survival of breast cancer patients and to improve their living conditions. The mamazone projects have the task of sensitizing the general public to the topic of "breast cancer". Sick women receive the necessary knowledge to meet their doctors on an equal footing and to be able to make the necessary therapy decisions independently and together with them.
With around 2000 members (as of January 2016), the association is one of the largest and most active breast cancer self-help initiatives. It maintains 14 regional advice centers for cancer patients and their relatives (13 in Germany and one in South Tyrol). A scientific advisory board made up of 32 breast cancer experts supports the work of the initiative.
Self-image and goals
The association is not only aimed at breast cancer patients, but also at healthy women, scientists and researchers who are committed to the fight against breast cancer. mamazone focuses on acquiring and imparting knowledge and supports women with breast cancer in demanding and supporting quality-assured, modern breast cancer treatment. Anyone who is a patient at mamazone sees themselves not only as suffering from breast cancer, but also as contributors, co-determinants and critical users in the spectrum of oncology.
The objectives of the work of mamazone eV are in detail:
- Inform, support and empower women with breast cancer
- Improve the quality of diagnostics, therapy and aftercare
- Observe, comment on and support research
Projects
The science congress "Project Diploma Patient"
The “Projekt Diplompatientin®” science congress, which lasts several days, is a training program for patients, doctors, nurses and journalists. In their lectures, scientists and medical professionals convey complex issues relating to the diagnosis, treatment and follow-up care of breast cancer in understandable language. The patients thus become experts in their disease in order to be able to demand modern, guideline-based and quality-assured early detection and treatment. In return, the speakers answer questions from the audience and are thus also sensitized to the questions of the patients.
The "La Mamma Project"
The “La Mamma” project is a one-day training series for nurses, breast care nurses and employees of oncological and gynecological practices. It provides the participants with the latest knowledge and the latest scientific findings and supports them in an empathetic, competent and holistic approach to breast cancer patients.
"Mamazone in conversation"
The association in conversation is a series of video interviews with recognized breast cancer experts and scientists. These ask critical questions, explain current research results and pass on important information on the topic of breast cancer. Accredited users can watch the videos on the association's website.
mamazone-Mobil
A car equipped with various illustrative materials regularly visits remote places in Germany to bring information about breast cancer to places where it is difficult to get. In this way, together with cancer experts, mamazone informs healthy and sick women about breast cancer and breast cancer prevention.
The Best Friend Award
The Best Friend Award is given to patients for breast cancer research. The members elect the winner once a year. The prize in the form of a small bronze statue is given to breast cancer researchers and doctors who think in the interests of the patients and are particularly committed to their concerns.
Previous winners:
- 2001 - Axel Ullrich
- 2002 - Petra Stieber
- 2003 - Ingo J. Diel
- 2004 - Siegfried Seeber
- 2005 - Richard Paul Baum
- 2006 - Michael Untch
- 2007 - Kurt Possinger
- 2008 - Christiane Kuhl
- 2009 - Tanja Fehm and Sabine Kasimir-Bauer
- 2010 - Florian Schütz
- Honorary bosom friend 2010 - Arthur Wischnik ( Augsburg Hospital )
- 2011 - Klaus Pantel
- Honorary bosom friend 2011 - online portal "What do I have?"
- 2012 - Peter Schmid
- 2013 - Sherko Kümmel and Gustav J. Dobos
- 2014 - Claudio Zamagni
- 2015 - Ursula Goldmann-Posch
- 2016 - Claudia Friesen
- 2017 - Ralph Wirtz
- 2018 - Jacqueline Sagasser
Internet portal: "How good is your breast center?"
The internet portal in the closed member area: "How good is your breast center?" Is intended to help patients find the right breast center more easily. mamazone is the first patient initiative to offer such an evaluation. The questions were developed according to the certification requirements for breast centers. The aim is to determine whether the required and described quality of the breast centers is also received and perceived by the affected patients.
Publications
MamazoneMAG is the association's membership magazine. With a circulation of 20,000 copies, it reports twice a year on the latest results in breast cancer research and medicine, as well as on breast cancer-related news in health policy. All members receive the magazine. It is also sent to gynecological and oncological practices as well as certified breast centers.
Other publications include two information brochures: "Breast cancer - the disease with many faces" provides information about various treatment methods and aftercare. The brochure "Breast Cancer Early Detection - What Women Should Know About It" presents the most important early detection examinations and shows their advantages and methodological limitations.
Awards
- Sponsorship award for self-help groups from the Marion and Bernd Wegener Foundation (2013)
- Cross of Merit on ribbon of the Order of Merit of the FRG for founder Ursula Goldmann-Posch for her work within the framework of mamazone (2010)
- Founder Ursula Goldmann-Posch among the top 15 at the 2013 German Engagement Prize
- Bavarian Constitutional Medal in Silver (2011) for founder Ursula Goldmann-Posch
- Bavarian State Medal for Social Merit for Ursula Goldmann-Posch (October 30, 2015)
- Springer Charity Award 2018
Scientific Advisory Board
The scientific advisory board has specific knowledge and experience in the research, diagnosis and therapy of breast cancer as well as in the health sector. He supports the association with information about new diagnostic and therapeutic developments, guidelines, care structures, disease management programs, ongoing studies and references to symposia and congresses, as well as answering subject-specific questions.
Memberships and collaboration
The association is a member of the following professional societies and organizations:
- European Cancer Patient Coalition
- German Society for Senology eV
- Landesvereinigung Selbsthilfe Berlin eV
- Working group for quality development breast centers at the Ministry of Health, Social Affairs, Women and Family, North Rhine-Westphalia
- Participation in committees within the framework of the statutory provisions on patient representation
- Working Group Gynecological Oncology eV
Key data and financing
The financing of the association's work rests on different pillars:
- Membership fees (regularly approx. 40%)
- donate
- own income below the maximum permitted for non-profit organizations, for example for participation in publications, lectures, events and
- Self-help promotion according to § 20, 4 SGB V. (regularly approx. 5%)
The association takes into account the guiding principles of the Federal Working Group on Help for the Disabled eV (BAGH) for cooperation with commercial enterprises in the health sector - especially with companies in the pharmaceutical industry.
criticism
In addition to membership fees, the work of the association is also sponsored by pharmaceutical companies. The main financier of mamazone is the pharmaceutical giant Roche. The organization is certified as a front runner among the recipients of donations from the pharmaceutical company Roche as well as positions related to pharmaceuticals, coupled with skillful public relations. In the basic paper "Lack of transparency, corruption and fraud in the German health care system" from 2004, Transparency International Germany already pointed out that mamazone was initiated directly with the participation of Hoffman La Roche and has since been marketed as an "independent" voice. mamazone aggressively represents the cooperation with the pharmaceutical industry. The chairman of the drug commission of the German medical profession, Wolf-Dieter Ludwig, criticized the fact that mamazone's behavior in connection with the marketing of drugs bordered on bodily harm. The pharmacologist Peter Schönhöfer judges the activities of mamazone as pharmaceutical advertising and not helpful for women. and states about the longtime board member and founder Ursula Goldmann-Posch : "Goldmann-Posch does not act like a representative of her patients, but like a representative of the pharmaceutical industry." Mamazone itself comments on this topic in mamazoneMAG 2/2015 page 54 f.
Web links
Individual evidence
- ↑ Article "They fight for a quality of survival" in the Augsburger Allgemeine Zeitung of September 28, 2002 (PDF; 507 kB)
- ↑ Note in Spiegel, issue 10/2005, on the t-shirt campaign from mamazone eV (PDF; 227 kB)
- ↑ mamazone on mammography screening in the EMMA magazine from autumn 2010. (PDF; 106 kB)
- ^ Article on the 10th anniversary of the science congress "Project Diplompatientin" in the Augsburger Allgemeine Zeitung of October 10, 2009.
- ↑ Doctors' newspaper of April 11, 2013
- ↑ mamazone founder receives award. (PDF; 569 kB) In: Augsburger Allgemeine Zeitung. April 21, 2010 (for the award of the Federal Cross of Merit to Ursula Goldmann-Posch)
- ↑ Annual report 2013
- ↑ Annual report 2013
- ↑ In the service of Schering and Co v. Melanie Zehran. taz from June 15, 2006
- ↑ s. a. Institute for Quality and Transparency of Health Information
- ^ Sick business v. Julia Bonstein, DER SPIEGEL, 17/2008 from April 21, 2008
- ↑ Self-help: patient wanted v. Martina Keller in DIE ZEIT, No. 51 from December 14, 2006
- ↑ Transparency International: Basic paper on transparency deficiencies, corruption and fraud in the German healthcare system ( memento of February 26, 2005 in the Internet Archive ) of November 12, 2004
- ↑ Give and take v. Martina Keller in DIE ZEIT, May 19, 2005, No. 21
- ^ Sick business v. Julia Bonstein, DER SPIEGEL, 17/2008 from April 21, 2008
- ↑ Tricks and camouflage - pharmaceutical industry infiltrates self-help groups (PDF; 80 kB), Panorama No. 660 from October 27, 2005 ( Memento from November 16, 2013 in the Internet Archive )
- ^ In the service of Schering and Co. v. Melanie Zehran. taz from June 15, 2006
- ↑ character assassination of self-help groups v. Gertrud Rust mamazoneMAG 2/2015