BRCA network
| BRCA network | |
|---|---|
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| purpose | Patient organization for the care of cancer patients |
| Chair: | Traudl Baumgartner (Munich), Branch Manager: Ursel Wirz (Bonn) |
| Establishment date: | 2010 |
| Seat : | Bonn |
| Website: | www.brca-netzwerk.de |
The BRCA-Netzwerk eV is a German patient organization. In particular, the network offers information about familial (“hereditary”) breast cancer and ovarian cancer , and it also advises and supports patients in Germany who have been diagnosed with cancer . In addition, the network sees itself as a point of contact for other genetic cancer risks and diseases.
The BRCA network derives its name from the English name BR east- CA ncer (breast cancer), which became internationally known after the discovery of the first two so-called breast cancer genes BRCA1 and BRCA2 .
history
The non-profit association was called BRCA network eV - Help with familial breast and ovarian cancer on February 9, 2010 in Cologne founded; It emerged from a group of women self-help after cancer eV that was created in August 2008. The German Cancer Aid has been the patron of the association since the foundation of the association and promotes the network financially and conceptually as part of a partnership to improve the care of people with cancer in the Federal Republic. In 2018, the funding amount from the German Cancer Aid was 180,000 euros. Other institutional sponsors include a. the GKV community support for self-help at the federal level and the Bonn Oncology Association.
The initiative to found the BRCA network came from cancer patients and their family members. After a build-up phase of the founding members' own efforts, the federal office was able to move into the House of Cancer Self-Help in Bonn. This started cooperation with other self-help associations in this headquarters. In 2019 there were 29 regional discussion groups for familial (“hereditary”) breast cancer and ovarian cancer.
After numerous other genes were discovered in addition to BRCA1 and BRCA2, which moderately to strongly increase the risk of other cancers than breast and ovarian cancer, the association was renamed in August 2019 in BRCA-Netzwerk eV - Help with familial cancers .
Board and membership
The BRCA federal board is elected for two years and works on a voluntary basis . The board of directors brings its work experience and arguments from cancer patients into the health policy discussion with the legislature and the political parties. Membership in the association is possible upon application. Events for advice and education are financed through private donations as well as grants and third-party funds. Donations from the pharmaceutical industry are not accepted.
Information work
One focus of the network is the supply of carriers of mutated BRCA1 or BRCA2 genes and their relatives with current factual information about the genetic risks associated with these mutations and about possible preventive measures , with the aim of making informed decisions regarding their own health can. In addition to medical care, numerous regional discussion groups have been set up for this purpose, which can be visited free of charge and which also enable an exchange with other people in a similar situation.
The BRCA network is also aimed at women who have developed breast and / or ovarian cancer and who suspect that a hereditary problem could be the cause, as well as healthy women and men whose families have frequent breast and ovarian cancer and who therefore consider having your personal cancer risk clarified with a genetic test .
In providing supraregional advice, the BRCA network also makes use of publications that have been developed by the German Cancer Aid and the German Cancer Society . Brochures, leaflets and videos are provided free of charge on request.
The BRCA network is entitled to nominate patient representatives to participate in the Federal Joint Committee (G-BA), the highest body of joint self-administration in Germany's health care system, and has concluded cooperation agreements with a number of university centers of the German Consortium for Familial Breast and Ovarian Cancer . The association also has information stands at specialist medical congresses and patient days.
Web links
Individual evidence
- ^ Bylaws of the BRCA network as amended on February 9, 2010.
- ^ Website of the BRCA network of March 14, 2010
- ↑ BRCA Network: Annual Report for 2018 , accessed on July 4, 2019.
- ↑ Discussion groups of the BRCA network , accessed on July 4, 2019.
- ↑ New name. New logo. New tasks. Press release of August 8, 2019
- ^ Marius Wunderle: Familial breast and ovarian cancer. W. Zuckschwerdt Verlag, Munich 2019, p. 239, ISBN 978-3-86371-244-0