Resources

Cancer and Genetics General Information

American Cancer Society

The American Cancer Society website has many general resources related to cancer, updates on genetics, and patient support.

Cancer and Careers

This website addresses many issues related to dealing with cancer treatment in the workplace. It includes strategies when discussing your diagnosis with your employer, navigating necessary time off and insurance, traveling, and advice about how to “keep up appearances” during cancer treatment.

Cancer Support Community

Completely free of charge and nonprofit, Cancer Support Community offers support groups, networking groups, lectures, workshops and social events in a non-residential, home-like setting. If you, a family member, or a friend has cancer, please explore this website and you will discover a program that will give you the social […]

Cancer101

This is a patient advocacy organization that provides tools and resources for patients and caregivers to navigate the cancer journey to make informed medical decisions. The best part of this site is the C101 planner, which empowers patients with information, engages them to take control of their diagnosis, and helps […]

Genetic Alliance

A non-profit that advocates for patients’ rights in genetic health issues and provides information.

Genetics Home Reference

This is a site that offers a patient-friendly explanation of genetic syndromes. It also provides additional websites and resources.

National Society of Genetic Counselors

This website introduces genetic counseling and offers much information including how to find a genetic counselor near you.

Hereditary Breast and Ovarian Cancer Syndrome (HBOC)

(These links are useful for patients with mutations in other genes that contribute to hereditary breast or ovarian cancer such as PALB2, CHEK2, ATM and Lynch Syndrome)

BRCA Positive Decision Guidance Tool

Breast Reconstruction

For patients considering mastectomy and breast reconstruction, this website offers information about the process and options. It also offers information about insurance coverage of surgeries, a blog of one woman’s experiences, and other resources surrounding this issue.

Bright Pink

Bright Pink is an organization specifically for young women who have a BRCA mutation. Their website offers online social networking, support groups, and information about screening and prophylactic surgeries, and tips for taking care of oneself following a positive BRCA test result.

Facing Our Risk Empowered (FORCE)

FORCE is a resource for Hereditary Breast and Ovarian Cancer support and advocacy.

His Breast Cancer Awareness

This site and organization provides information about male breast cancer. This page was started by a survivor of male breast cancer, Harvey Singer together with his wife. Their goal was to provide men with information about breast cancer prevention and treatment.

HysterSisters

HysterSisters is a website that offers information about hysterectomies and oophorectomies for both benign and cancerous findings. In addition to information on what to expect before and after surgery, this website offers online support forums, chat rooms, and stories from other women.

John W. Nick Foundation

This organization is also dedicated to men with breast cancer.

Male Breast Cancer

This is an Australian-based website that is dedicated to men with breast cancer and their families and friends. The website offers up to date information regarding male breast cancer facts, treatment options, and life after breast cancer treatment.

Men against Breast Cancer

Men who have a loved one affected with breast cancer can find productive strategies for dealing with their loved one’s diagnosis.

National Ovarian Cancer Coalition (NOCC)

The NOCC website offers education and support for individuals concerned about ovarian cancer.

Prophylactic Mastectomy Video Series

Developed by Glamour Magazine, Caitlin Brodnick is a 28-year-old comedian who tested positive for a BRCA1 gene mutation. Caitlin makes the decision to undergo a preventative double mastectomy. You can follow her on her journey in this new documentary series, available in episodes on YouTube.

Sharsheret

Sharsheret is a national organization of cancer survivors dedicated to addressing the unique concerns of young Jewish women facing breast cancer. Sharsheret has responded to thousands of phone calls from health care professionals, Jewish organizations, women’s organizations, women affected by breast cancer, their families, and friends. Sharsheret’s efforts to support […]

Sisters Network Inc.

Sisters Network Inc. is a national African American breast cancer survivorship organization. They provide information and support for women African American women with breast cancer while also trying to educate unaffected women. They host multiple conferences annually that travel throughout the country in order to reach as many women as […]

Susan G. Komen for the Cure

This organization’s website has many resources, including information and support for individuals with breast cancer and for their loved ones.

Young Survival Coalition

The Young Survival Coalition is an organization that is dedicated specifically to issues unique to young women with breast cancer. Their website has lots of information and resources for young women.

Li-Fraumeni Syndrome (LFS)

Cancer.Net: Li-Fraumeni Syndrome

This website provides an easy-to- understand outline of Li-Fraumeni Syndrome. It also has links to webpages explaining the various types of cancers that can be seen in patients with LFS.

Li-Fraumeni Syndrome Association

The LFS Association website provides a wide range of information, advocacy, and support services for individuals and families with Li-Fraumeni Syndrome. They support a consortium of researchers, medical providers and caregivers to further research and promote optimal care for the LFS community. They also hold an annual conference around the […]

Li-Fraumeni Syndrome Support Group

This is an online community of patients with Li-Fraumeni syndrome.

National Institutes of Health: Clinical Trial

A clinical trial funded by the National Institutes of Health. The goals of this study are to learn more about the types of cancers that occur in individuals with LFS, to study the role of the TP53 gene in the development of cancer, to look for other possible genes that […]

Cowden Syndrome (PTEN Mutations)

Pinterest for PTEN Mutations

This is a Pinterest page full of links about Cowden Syndrome, and PTEN mutations.

PTEN Foundation

The PTEN Foundation was founded to provide hope and financial support to patients, support research, provide education, and to promote awareness.

PTEN Previvor Blog

This is an online blog written by a young previvor who was found to have a PTEN mutation. Her story of choosing a double mastectomy to reduce her risk, as well as her day-to-day activities while living with Cowden syndrome, is narrated at this site.

Hereditary Colorectal Cancer Syndromes

(Patients with Lynch Syndrome, CHEK2 mutations, Familial Adenomatous Polyposis (FAP) and Multiple Adenomatous Polyposis will find these sites useful)

Colon Cancer Alliance

This is a website dedicated to individuals with colon cancer or individuals with family or friends with colon cancer. It contains information about living with a colon cancer diagnosis, current clinical trials for colon cancer, treatments for colon cancer, personal stories of survivors, and additional support information.

FAP Gene

This online support group is based in the UK and provides informal chat rooms, Facebook links, a newsletter, and other resources for patients with FAP.

Hereditary Colon Cancer Takes Guts

HCCTG is a support group for patients to raise awareness about hereditary colon cancer conditions. HCCTG works with other groups to develop patient-friendly resources that can successfully empower families to be strong advocates of their own health care.

PolyPeople

This website is a support group for patients and families with FAP and other hereditary polyposis conditions. It provides information about diets, current clinical trials, how to raise awareness about FAP, and ways to contact other individuals with FAP.

Peutz Jeghers Syndrome

Peutz-Jeghers and Juvenile Polyposis Online Support Group

The Smart Patients Peutz-Jeghers Syndrome community is an online discussion forum where members dealing with PJS, juvenile polyposis syndrome and familial adenomatous polyposis share advice and support with other patients and caregivers.

Hereditary Diffuse Gastric Cancer (HDGC)

Gastric Cancer Foundation

This is a group that focuses on research, education, and advocacy for patients affected by gastric cancer. They were the first group to form a gastric cancer registry for research, but also focus on genetic research as well.

No Stomach for Cancer

This is an international support group with resources regarding gastric cancer and prophylactic gastrectomy, and also organizes various events to unite patients affected by stomach cancer.

Hereditary Kidney Cancer Syndromes

Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Family Alliance

Is a family and patient support and research organization for HLRCC syndrome.

Von Hippel Lindau Syndrome (VHL) Alliance

Is a family and patient support and research organization for VHL syndrome.

Familial Atypical Multiple Mole Melanoma (FAMMM)

Melanoma Research Foundation (MRF)

The MRF is supports medical research to improve melanoma therapy. The MRF educates patients, caregivers and physicians about the prevention, diagnosis and treatment of melanoma. They also support patients with information and forums.

Pancreatic Cancer Action Network (also useful for patients with PALB2 mutations)

The Pancreatic Cancer Action Network is resource whose primary goals are to advance research, support patients and create hope for anyone facing pancreatic cancer. They offer online resources and information about clinical trials.

Gorlin Syndrome

Basal Cell Carcinoma Nevus Syndrome Life Support Network

BCCNS provides online support and information to individuals with Gorlin Syndrome. The group also hosts an annual conference for individuals to learn the latest information and meet others with the diagnosis.

Gorlin Syndrome Group

This is an online website from the UK. They offer information about the genetics, surveillance, and treatment for those with Gorlin syndrome.

Hereditary Endocrine Tumor Predisposition Syndromes

(Paraganglioma and Pheochromocytoma and MEN syndromes)

American Multiple Endocrine Neoplasia Support

This website offers seminars, patient connections, and information about Multiple Endocrine Neoplasia syndromes.

Association for Multiple Endocrine Neoplasia Disorders (AMEND)

A British website run by patients, for patients, to inform and support anyone affected by Multiple Endocrine Neoplasia (MEN) type 1 or 2 or associated endocrine syndromes and tumors. Offers short videos, discussion forums, information and more about MEN syndromes and tumors.

The Carcinoid Cancer Foundation

This is a non-profit group for patients with carcinoids and related neuroendocrine tumors. The mission of this foundation is to increase awareness and educate the general public and healthcare professionals regarding carcinoid and related neuroendocrine tumors (NETs), to support NET cancer patients and their families, and to serve as patient […]

The National Endocrine and Metabolic Diseases Information Service (NEMDIS)

This website is sponsored by the National Institutes of Health (NIH) and offers a summary of Multiple Endocrine Neoplasia Type 1.

The Pheo Para Alliance

The Alliance is a non-profit organization with a focus on finding a cure for pheo para through education, research, and fundraising.

The Pheo Para Troopers

A Pheo Para Trooper is someone who is passionate about fighting pheochromocytoma and paraganglioma. The goal of this foundation is to empower and support patients while contributing anything they can to finding a cure for these diseases.

The Pheochromocytoma Support Board

This is an online, active discussion board for patients with pheochromocytomas or paragangliomas.

Hereditary Prostate Cancer

(These are general websites that are not specific to hereditary prostate cancer; the many websites for BRCA mutation carriers are very relevant to hereditary prostate cancer.)

Prostate Cancer Foundation (PCF)

A comprehensive website containing information about prostate cancer, research opportunities, links for family members and caregivers and treatment options.

Us Too

This group is a prostate cancer education and support group. They provide information about prostate cancer screening, treatments, and new clinical trials.