Patients who are diagnosed with cancer or face a high risk of cancer due to a genetic predisposition have many questions that need to be answered. This webpage lists a number of resources that one may find helpful to learn more about a diagnosis or predisposition to cancer. Links have been separated by type of cancer:
General and Hereditary Cancer Websites
ACOR is a collection of online cancer resources aimed at providing patients and families with accurate information in a supportive online environment.
This website includes a variety of helpful information and new research about cancer. This site particularly includes research about how diet and exercise and other lifestyle factors can affect cancer risk. There are links to quizzes, tips, and healthy recipes under the "Reduce your Cancer Risk" tab.
This website provides a great deal of information on the different cancers, treatment options, side effects, and clinical trials.
Our Cancer Center website provides in-depth information on the prevention, diagnosis, treatment, and care of cancer patients.
Chemocare is a website designed to provide information about chemotherapy to patients and their families, caregivers and friends. On this user friendly website, one can easily find information about various chemotherapy drugs, how they work, managing side effects, and precautions for patients.
This is a non-profit organization that partners with professional residential maid service companies who agree to provide four free cleaning services to two women in their area at a time. It requires an online application process and a doctor's verification of treatment.
Fertile Action is working to ensure every woman touched by cancer actualizes her dream of motherhood. They negotiate fertility discounts for women with a cancer diagnosis or a known BRCA mutation.
Genetic Alliance promotes the advocacy, education, and empowerment of all individuals whose lives have been affected by cancer.
This webpage offers practical information on what to expect from the cancer experience. It includes detailed information and practical steps you can take to cope with the effects of cancer.
This is a non-profit organization, which also includes blogs and news articles, as well as links to other resources. Their mission is to provide a resource to encourage discussion, action and funding of genetic testing for those people who are at high risk for genetically transmitted diseases and are willing to take preventative measures, but cannot afford the prohibitive costs of such testing.
Pregnant with Cancer: Your Support Network for Hope
Their mission is to support women who are diagnosed with cancer during their pregnancy and connect them with other women who have gone through similar experiences. On the website there are survivor stories, related articles and a newsletter.
The mission of this organization is to accelerate groundbreaking cancer research that will get new therapies to patients quickly and save lives. SU2C's goal is to bring together the best and brightest in the cancer community, encouraging collaboration instead of competition. By galvanizing the entertainment industry, SU2C creates awareness and builds broad public support for this effort.
The National Cancer Institute
The National Cancer Institute (NCI) is a component of the national Institutes of Health (NIH), one of eight agencies that compose the Public Health Service (PHS) in the Department of Health and Human services (DHHS). the NCI, established under the National Cancer Institute Act of 1937, is the Federal Government's principal agency for cancer research and training.
This is a straightforward website with information about when you should consider genetic counseling, factsheets about topics in cancer genetic counseling, tips for researching your family history, and more. Yale Cancer Genetic Counseling also has a blog-style website (www.yalecancergeneticcounseling.blogspot.com/) which contains information about news in genetics research and genetic counseling, and provides links to upcoming conferences and educational events.
Other Hereditary Cancer Syndromes
This is an international patient group supporting and informing anyone affected by or interested in multiple endocrine neoplasia disorders and their associated sporadic endocrine growths. Their website provides medical information, discussion boards, links to upcoming events, and many other resources.
Birt Hogg Dube Syndrome Family Alliance
The Birt-Hogg-Dube syndrome website features a section for families affected by the condition and a section for researchers. Along with easy to understand descriptions of signs and symptoms of BHDS, diagnosis, treatment, and testing, the organization offers and annual symposium open to interested parties. Some areas of the website require registration; registration is free.
This website aims to provide healthcare, counseling, and support services to children and adults affected by Basal Cell Carcinoma Nevus syndrome. This website focuses on early diagnosis and treatment of BCCNS.
The mission of this organization is to find effective treatments and a cure for Fanconi anemia and to provide education and support services to affected families worldwide. Their website includes resources for families and links to new research and fundraising opportunities and events like an annual "Family Meeting" with talks by leading researchers and specialists.
This is a patient group and support network that offers guidance, advice, and information to families, friends, and caregivers affected by Gorlin Syndrome.
This website aims to provide up-to-date information about neuroendocrine diseases so they can make informed decisions for the treatment of pheochromocytoma and paraganglioma. In the future, the site will also serve as a virtual support group for patients and their families.
The VHL Family Alliance provides information for families and physicians about this disorder, and local self-help support groups for families affected with VHL. International VHL Support Organizations are established on five continents, and services include online discussion groups in seven languages. Another web destination for this organization is here.
Gastric Cancer Websites
This is a non-profit corporation dedicated to research and education of gastric and esophageal cancers. They funded a registry at Memorial Sloan-Kettering of individuals with early onset and familial gastric cancer, and the link is included under the Clinical Studies and Patient Registries tab on this website.
This website provides education and support for people affected by gastrointestinal stromal tumor.
This website provides a wealth of helpful medical information about Hereditary Diffuse Gastric Cancer (HDGC), as well as links to articles about medical management and genetic testing for HDGC.
Breast and Ovarian Cancer Websites
Bright Pink is a national non-profit organization dedicated to providing education and support to young women who are at high risk for breast and ovarian cancer. Their website provides information for high-risk individuals, a support forum, "Ask the Genetic Counselor," monthly breast self-exam e-reminders, and a program called Pink Pal which matches individuals with a similar stories/ experiences.
This website provides reminders to individuals to conduct self-breast exams. This organization believes in the importance of monthly breast self-exams and calls on women to know their bodies and be advocates for their own health.
A nonprofit organization for women whose family history or genetic status puts them at high risk of getting ovarian and/or breast cancer. On the FORCE website, one can find information on hereditary cancers, risk assessment, genetic testing, risk management including chemoprevention and surgical options. Other features available on the FORCE website include message boards and chat rooms, locating specialists, and a toll-free helpline.
This webpage provides extensive information on the BRCA1/2 genetic testing. Anyone who might pursue or is undergoing genetic testing will benefit from reading through these commonly asked questions and answers. This document can facilitate one's understanding of the BRCA genetic testing, what the results mean and what steps to take with knowledge of the results.
HysterSisters offers information to women who are considering or have previously had hysterectomies. The website includes hysterectomy options and alternatives, pre/post-op information, as well as insight on hormones, intimacy, fitness, and cancer.
MABC is the first national non-profit organization designed to provide targeted support services to educate and empower men to be effective caregivers when breast cancer strikes a female loved one; as well as, target and mobilize men to be active participants in the fight to eradicate breast cancer as a life threatening disease.
MSDBC is a non-profit organization whose mission is to provide support to mothers whose daughters are diagnosed with breast cancer by matching them with women who have undergone similar experiences.
The National Ovarian Cancer Coalition provides information about ovarian cancer and includes sections for the newly diagnosed, survivors, and caregivers.
Ovarian Cancer National Alliance
The Ovarian Cancer National Alliance offers information about ovarian cancer and promotes education, advocacy, and awareness. Also, check out the sections on clinical trials and policies.
The mission of this organization is to fund research to find a method of early detection and ultimately a cure for ovarian cancer. Their website provides a list of fundraising events and links to support resources.
The PA Breast Cancer Coalition (PBCC) represents, supports, and serves breast cancer survivors and their families in Pennsylvania through educational programming, legislative advocacy and breast cancer research grants. The PBCC is a statewide non-profit organization that creates the hope of a brighter tomorrow by providing action and information to women with breast cancer today.
This organization was established by actress Christina Applegate to provide aid for individuals who are at increased risk for breast cancer and do not have insurance or the financial flexibility to cover the high costs associated with breast screenings.
Sharsheret is a national organization of cancer survivors dedicated to the unique concerns of young Jewish women facing breast cancer. This organization provides information to patients and many distinct services such as the Link program which connects young Jewish women facing breast cancer to volunteers who are available to share their own breast cancer experiences. Sharsheret hosts education and outreach programs, has a Sharsheret Update newsletter, and message boards available.
The Susan G. Komen Breast Cancer Foundation fights against breast cancer through its support of innovative research and community-based outreach programs. This website provides extensive information for patients as far as early detection and screening, diagnosis, treatment, and breast cancer research. Not only does it provide information but it has a helpline available for patients, awareness and education events, inspiration stories, message boards, and a breast cancer newsroom.
Colon and Rectal Cancer Websites
Started by a Lynch syndrome patient, this organization improves the lives of individuals and families affected by Lynch syndrome and associated cancers through research, education, and screening. The encourage participation in registries for research and make resources available to determine whether a person or family is at a high risk for Lynch syndrome.
The American Gastrological Association website provides patients with some basic information about various gastrointestinal diseases including information on colorectal cancer.
This website provides patients with a variety of educational materials and information brochures about diseases of the colon, rectum and anus. Patients can learn about the more common colorectal diseases and the appropriate treatments, risk assessment for colorectal cancer, the available screening and prevention methods, and locating a colorectal surgeon.
This organization educates the public and healthcare professionals about Lynch syndrome, and helps to fund research for a cure for this disease.
This website was started in 2004 to fill the need for information on familial adenomatous polyposis (FAP). The information is to be from sources that are reliable, non-medical, up to date, and easily understood by patients.
This is a non-profit organization that envisions victory over colon and rectal cancers. They empower and activate a community of patient, fighters, and champions to push for better policies, and to support research, education, and awareness for all those touched by colorectal cancer.
This organization is a nonprofit organization serving the hereditary colon cancer community. It connects patients, caregivers, and medical professionals to educational, social, and financial resources while promoting requisite research and health care initiatives. They build this community holistically by acting as a conduit to physical and psychological care from a variety of traditional and modern health care practices.
The mission of I Have Lynch Syndrome, Inc. is to save lives through education and raising awareness among the global medical community and the general public. It is estimated that there are 600,000 to 1 million Lynch carriers in the US, but only about 5% of them know they are carriers. This community fights to increase awareness while providing hope and decreasing despair surrounding Lynch syndrome.
The Johns Hopkins colorectal cancer web site is designed to assist patients, families, and caregivers in learning more about colorectal cancer.
The primary mission of Lynch Syndrome International is to serve the global communities by focusing on providing support for individuals afflicted with Lynch syndrome, creating public awareness of the syndrome, educating members of the general public and health care professionals, and providing support for Lynch syndrome research endeavors.
This website provides information regarding colorectal cancer symptoms, screening, treatments, and clinical research. Patients can also access message boards to ask fellow colorectal cancer patients questions or patients can use the Anderson Network to speak to other colorectal cancer patients to share personal experiences.
National Colorectal Cancer Research Alliance
The National Colorectal Cancer Research Alliance was founded with the goals of raising awareness of the seriousness of colorectal cancer and increasing the number of people receiving preventative testing for colorectal cancer. This website provides some basic information about warning signs/symptoms, risk factors, and lowering one's risk, colonoscopy, and other procedures.
This organization formed a website to ensure those affected by FAP, patients and families, or those who are interested in the disease are well informed. They also want to raise awareness of FAP, particularly among general practitioner. The website is a trusted starting place and support group for people affected by FAP.
The Colon Cancer Alliance’s mission is to knock colon cancer out of the top three cancer killers. They champion prevention, fund cutting edge research, and provide high quality patient support services. This organization was built on compassion, respect, and commitment.
This is a grassroots movement to raise awareness and screening rates for colon cancer. They use volunteer driven events in communities throughout the United States to raise money, which is then funneled back into the community to raise awareness.
Started by a patient, this foundation strives to be the international leader in colon cancer prevention, support, and treatment. It provides support for those facing colon cancer, their families and friends, and for those researching ways to successfully treat the disease. The foundation uses education to encourage prevention and increase screenings for colon cancer.