BRCA1, familial breast-ovarian cancer susceptibility 1

Organizations

Are there good support groups for people with BRCA1 gene mutations?

There are wonderful support groups for people with Hereditary Breast and Ovarian Cancer syndrome. Some examples include:

References
  • http://www.facingourrisk.org/index.php
  • https://www.brightpink.org
  • http://www.willow.org/get-information/hereditary-breast-ovarian-cancer-hboc/
  • http://www.livestrong.org/we-can-help/hereditary-breast-and-ovarian-cancer/
  • Sharsheret: http://www.sharsheret.org/
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Where do I find other people with Hereditary Breast and Ovarian Cancer syndrome or/and people with BRCA1 gene mutations?

How do I become involved in "free the data"

How can I stay up-to-date on what is recommended for people with Hereditary Breast and Ovarian Cancer syndrome and for people with BRCA1 gene mutations?

Where do I find other people with Hereditary Breast and Ovarian Cancer syndrome or/and people with BRCA1 gene mutations?

Other people with Hereditary Breast and Ovarian Cancer Syndrome can be found through these online support groups:

References
  • http://www.facingourrisk.org/index.php
  • https://www.brightpink.org
  • http://www.willow.org/get-information/hereditary-breast-ovarian-cancer-hboc/
  • http://www.livestrong.org/we-can-help/hereditary-breast-and-ovarian-cancer/
How do I become involved in "free the data"

The "Free the Data" movement is a grassroots initiative which asks people who have had genetic testing for the BRCA1 and BRCA2 genes to share their results and health information with the "Free the Data" team so that they can enter them into ClinVar, an open-access database of mutations run by the NIH in order to gain a better understanding of hereditary breast and ovarian cancer. This step is important as not all testing laboratories enter their information into confidential, but publicly accessible databases like Clinvar where researchers can use them.

The goal of the "Free the Data" movement is to understand more information about mutations and variants of unknown significance (VUS) in BRCA1 and BRCA2. This information will hopefully help doctors find better treatment options for those with those mutations.

Over time, the campaign hopes to expand to encompass all genes and all mutations, powering new research and better health for all.

To learn more about "Free the Data" and ClinVar there is information through the NCBI.

How can I stay up-to-date on what is recommended for people with Hereditary Breast and Ovarian Cancer syndrome and for people with BRCA1 gene mutations?

Joining a national or international support group link FORCE, Bright Pink, Willow, or Sharsheret is a great way to get new information about Hereditary Breast and Ovarian Cancer (HBOC) syndrome.

Receiving cancer screening and treatment in a cancer center is another way stay up-to-date with current management guidelines. Some cancer centers may have hereditary cancer risk programs available.

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