Cancer Genetics

Patient and Family Resources

Links to Hereditary Cancer Risk Information and General Cancer Resources

Links to Advocacy, Education and Support Resources

American Cancer Society
www.cancer.org/cancer/cancer-causes/genetics

The American Cancer Society’s page on genetics and cancer includes information about genes and cancer, family cancer syndromes, and genetic testing.

ASCO Cancer Net
www.cancer.net/navigating-cancer-care/cancer-basics/genetics

American Society of Clinical Oncology’s Cancer Net patient information source brings the expertise and resources of ASCO to people living with cancer and those who care for and about them. The genetics of cancer page reviews the basics of cancer genetics. The hereditary cancer-related syndromes page provides a comprehensive directory and review of many specific cancer syndromes.

Bright Pink
www.brightpink.org

Bright Pink is a non-profit focused on the prevention and early detection of breast and ovarian cancer in young women.

Facing Our Risk of Cancer Empowered (FORCE)
www.facingourrisk.org

FORCE’s mission is to improve the lives of individuals and families affected by hereditary breast, ovarian, and related cancers. FORCE is a non-profit voice for the hereditary cancer community, a voice leading to greater awareness, better medical options, wider access to care, and improved outcomes

Genetic Alliance
www.geneticalliance.org

The Genetic Alliance is a voice of advocacy in genetics, empowering individuals, families, communities, and organizations to make their voices heard by including stakeholders from industry, research, healthcare, and public policy.

Genetics Home Reference
https://ghr.nlm.nih.gov

The Genetics Home Reference is a gene and health condition specific guide and educational resource for consumer-friendly information on genetic conditions and the effects of genetic variation of human health.

Li-Fraumeni Association (LFSA)
www.lfsassociation.org

LFSA provides information, advocacy and support services for individuals and families with Li-Fraumeni Syndrome. LFSA supports a consortium of researchers and clinicians to promote optimal care for the LFS community.

Lynch Syndrome International (LSI)
www.lynchcancers.com

LSI is founded and governed by Lynch syndrome survivors, their families, and clinicians who specialize in Lynch syndrome. LSI provides support, public awareness, research, and education for Lynch syndrome.

The National Breast Cancer Coalition (NBCC)
www.stopbreastcancer.org

The National Breast Cancer Coalition is a grassroots advocacy effort in the fight against breast cancer. In 1991, the Coalition was formed with one mission - to eradicate breast cancer through action and advocacy.

National Cancer Institute (NCI)
www.cancer.gov/about-cancer/causes-prevention/genetics

The National Institute of Health-National Cancer Institute’s information page describing the genetics of cancer including genetic changes of cancer, hereditary cancer syndromes, and genetic testing.

National Organization for Rare Disorders (NORD)
www.rarediseases.org

NORD is a patient advocacy organization dedication to individuals with rare diseases and the organizations that serves them. Website includes a directory of patient advocacy organizations for many cancer syndromes.NORD is committed to education, advocacy, research and patient services.

The National Ovarian Cancer Coalition (NOCC)
www.ovarian.org

NOCC is a non-profit support organization dedicated to raising awareness, promoting education, and improving the overall quality of life for individuals with ovarian cancer. NOCC advocates for improved early detection screening methods, provides funding of research into ovarian cancer, and ensures comprehensive information about ovarian cancer.

National Society of Genetic Counselors (NSGC)
www.nsgc.org/

NSGC provides a directory to find a genetic counselor by name, state, zip code, and specialty. As the professional organization for genetic counselors, NSGC promotes education, research and public policy to ensure the availability of quality genetic services.

The PTEN Foundation
https://ptenfoundation.org

The PTEN Foundation provides funding for research as well as information, advocacy and support services for individuals and families with PTEN Hamartoma Tumor Syndromes.

Young Survival Coalition (YSC)
www.youngsurvival.org

The YSC is an international non-profit network of breast cancer survivors and supporters dedication to the concerns and issues that are unique to young women. YSC offers resources, connection and outreach so women feel supported, empowered and hopeful.