While information put forth by advocacy organizations can be helpful, it should not be treated as advice from a qualified medical professional. Our program encourages patients to be cautious as they navigate online resources and forums for individuals with hereditary cancer syndromes. While individuals may have similar experiences and offer advice, decisions about your health care should always be made with a physician in the context of your personal medical and family history.
Facing Our Risk of Cancer Empowered (FORCE) is a non-profit organization whose mission is to improve the lives of individuals and families affected by hereditary breast, ovarian, and related cancers. FORCE is involved in a number of opportunities to advocate for, create awareness about, and provide support to families and individuals touched by hereditary cancer syndromes. FORCE also has a toll-free, confidential national helpline that can be reached at 1-866-824-RISK (7475). Volunteers will match callers to a peer counselor with similar experiences and/or provide referrals to additional resources, but will not offer medical advice. The website also facilitates communication between individuals so that people in similar situations can provide support to one another. Information discussed on forums within the website should be interpreted with caution and not as medical advice.
Bright Pink is a national non-profit organization focused on the prevention and early-detection of breast and ovarian cancer in young women. The organization was founded by a young woman who learned she had a BRCA1 mutation at the age of 22. Bright Pink seeks to provide education and support to young women specifically.
Sharsheret, a Hebrew word meaning “chain,” is a national non-profit organization which seeks to improve the lives of Jewish women and families living at increased genetic risk for breast and ovarian cancer through personalized support and educational outreach. Among many things that this organization does, it is known for creating a “chain” through the Peer Support Network. This peer-to-peer network connects newly diagnosed women/women who have recently learned of increased risk for breast cancer to others who can share similar diagnoses and experiences.
The Young Survival Coalition is a resource dedicated to supporting individuals diagnosed with breast cancer at a young age. The organization aims to strengthen the community, address the unique needs, amplify the voices, and improve the quality of life of young adults affected by breast cancer locally, nationally and internationally.
The Colorectal Cancer Alliance provides support and informational services for patients, survivors, and families. The website can be used to find information about clinical trials, learn about the organization’s helpline, get connected to patient and family support navigators, learn how to become involved in programs, or learn more about colorectal cancer.
AliveAndKickn is a Lynch syndrome hereditary cancer advocacy organization. The website provides educational materials about Lynch syndrome, advocacy and support resources, and opportunities to become involved in events and research.
This organization’s mission is to support research and unite the caring power of people worldwide affected by stomach cancer. The organization is involved in raising awareness about stomach cancer, supporting patients and families through resources, providing education about stomach cancer, and engaging in research and collaboration.
This website is provided by the Oncofertility Consortium, a nationwide initiative dedicated to providing improved fertility preservation options for individuals who have undergone cancer treatments that have threatened their fertility. The website broadly discusses options for fertility preservation through informative Q&A and animations. Because every individual’s experience with cancer treatment is unique, the information is meant to be used as a guide for discussions with a physician.
The National LGBT Cancer Network is works to improve the lives of LGBTQ+ cancer survivors and those at risk by educating the community about cancer risk and surveillance, advocating for LGBTQ+ cancer survivors, and providing resources for both patients and healthcare providers.
This non-profit organization is a leading patient-focused resource for breast health and breast cancer information and support. BreastCancer.org’s mission is to help women, men, and their loved ones make sense of the complex medical and personal information about breast health and breast cancer.
Stupid Cancer offers a lifeline to the young adult cancer community by connecting them to age-appropriate resources and peers who “get it.” Their mission is to empower adolescents and young adults affected by cancer by ending isolation and building community.
The Pheo Para Alliance (PPA) is an internationally recognized leader in the advocacy for and awareness of pheochromocytoma and paraganglioma. Their mission is to empower patients with pheochromocytoma or paraganglioma, their families, and medical professionals through advocacy, education, and a global community of support, while helping to advance research that accelerates treatments and cures for pheochromocytoma and paraganglioma.
This site provides detailed guidelines that were developed as recommendations for screening and management of the late effects that may arise as a result of treatment for cancers diagnosed in childhood or early adulthood. These guidelines are targeted to healthcare professionals, and it is recommended that patients review the information in conjunction with a physician familiar with long-term follow up for childhood cancer survivors.
The CancerQuest website was created by the Emory Winship Cancer Institute to provide easy-to-understand, accurate information about cancer biology and treatment. They aim to serve patients as well as caretakers and providers.
The CDC’s website provides an entire section about cancer, cancer treatments, preventing cancer, information for survivors and caregivers, information about national programs, and other helpful resources.
The Ovarian Cancer Research Alliance’s website has a “For Patients” section that includes information for newly diagnosed patients, clinical trials, resources for young women, peer support services, and information about their national conference.
In 2004, several offices and agencies within the U.S. Department of Health and Human Services launched the U.S. Surgeon General’s Family History Initiative. The purpose of this initiative is to raise awareness about the importance of obtaining, recording, and maintaining an accurate family health history. This website provides resources to help individuals organize, create, and print their family health history.
This webpage on the NIH website provides information about laws pertaining to genetic discrimination such as the Genetic Information Non-Discrimination Act (GINA) and others. See our fact sheet on concerns of insurance discrimination here.