Links of Interest


FORCE (Facing our Risk of Cancer Empowered) is a nonprofit support organization for women whose family history and genetic status put them at high risk for ovarian and/or breast cancer. This web site allows individuals and families facing the unique issues and concerns associated with BRCA1/2 mutations to discuss their feelings with others in similar situations. Information discussed on this web site should not be interpreted as medical advice.

Please read the disclaimer carefully. FORCE also has a toll-free, confidential, national helpline (1-866-824-RISK (7475)) Volunteers staff the line from noon-2pm (EST) on Mondays, and 10am-noon and 7-9pm (EST) Tuesday -Friday but callers may also leave a message to receive a call back. Volunteers will match callers to a peer counselor with similar experiences and/or provide referrals to additional resources but they will not offer medical advice.

Bright Pink is an organization that provides information and support for young women at high risk for breast and ovarian cancer. Their website has information, resources, and a forum for women to share their experiences and questions with others. Their mission is “to enlighten and empower high risk individuals to take control of their breast and ovarian health… for a better, brighter future.”

In this series entitled “The Inheritance: My Family’s Legacy of Breast Cancer”, Regina Brett, a columnist for The Plain Dealer in Cleveland, Ohio writes honestly and poignantly about her thoughts and emotions as a mother, breast cancer survivor, and a BRCA1 mutation carrier. This series specifically chronicles her and her daughter’s emotions as her daughter goes through the process of genetic testing and making decisions about prophylactic surgery.

Aetna sponsors this website but its information content is provided by Harvard Medical School. It includes basic information on genetics, the human genome project, and genetic testing. The ‘Decision Guide: Breast and Ovarian Cancer’ section includes information about breast and ovarian cancer, BRCA1 and BRCA2, the genetic counseling and testing process, possible test results, and the available screening and prevention options.

This blog was started in April 2008 by Julie Auton who is a writer, breast cancer survivor, and BRCA1 mutation carrier. It is an honest (but often humorous) chronicle of her journey through genetic testing, decisions about prophylactic surgery, breast reconstruction, and her daily life as a breast cancer survivor and BRCA1 carrier. She uses her experiences to give insight and advice to others going through similar journeys.

This film (“In The Family”) is a compelling, emotional, and honest documentary of the filmmaker, Joanne Rudnick’s struggle with learning that she is BRCA1+ and facing decisions about prophylactic surgeries as a young, single woman. Through her journey, she also seeks the advice of and documents the experiences of other women with different stories and perspectives of living with hereditary breast and ovarian cancer. It was aired on PBS in October and is now available for purchase on DVD.

Breast Cancer

Veronica Brett is a new luxury collection of swimwear designed especially for breast cancer survivors and women who have had risk-reducing mastectomies. As a BRCA mutation carrier, designer and founder Patrica Brett was inspired by the women in her own family to create fashionable, designer-level options for life post-surgery.

Susan Wood Reider, artist and breast cancer survivor, showcases her series of mixed-media collage artwork entitled “Strange Gifts: Honoring the Journey” on this website. She describes her art as “one artist’s response to the reality of cancer’s wake up call” and a “thank you to life through art”. The pieces are rich, beautiful, colorful images and a selection is available as a gift-boxed set of blank cards. The cards are $20 for a set of 8 and a minimum of 25 % of the proceeds is donated to organizations benefiting cancer survivors.

This is the website of a national non-profit organization which provides one-on-one telephone support for young Jewish women with breast cancer or at high risk of developing breast cancer. Sharsheret (which is Hebrew for “chain”) links women in their twenties and thirties who have recently been diagnosed with breast cancer to survivors who have volunteered to share their experiences. Callers are matched to volunteers based on their specific concerns and experiences. This website also has a list of links to other relevant organizations, support services, and research articles.

The Young Survival Coalition is a resource dedicated to the special needs of women diagnosed with breast cancer at a young age. This website offers women an opportunity to volunteer for activities aimed at increasing funding for breast cancer research, technology, education, and outreach. It provides an exciting forum for discussion between women diagnosed with breast cancer at an early age.
This comprehensive site provides information on a wide range of topics related to breast cancer including risks, diagnosis, treatment, reconstruction, menopause, support and research.  This site is committed to informing and empowering women with breast cancer and has easy to read text and numerous helpful pictures.

The Myself: Together Again project was started as a resource for young women diagnosed with breast cancer who have chosen to have breast reconstruction after mastectomy.  This website includes black and white photographs taken by a professional photographer which documents one woman’s decision to have breast reconstruction using implants and provides a photo-narrative of the reconstruction process. 

*Please also see BRCA1/BRCA2 Resources above

Colon Cancer

The Colon Cancer Alliance provides a venue for the voices of colon cancer survivors to be heard. This site provides the latest updates in colon cancer research, the option for those dealing with colon cancer to talk with someone who has had a similar experience, as well as links to the best colon cancer sites on the internet. This site is an amazing resource for colon cancer survivors.

This website is run by Johns Hopkins Medical Institutions and it provides a great overview of hereditary colon cancer including information about colon cancer, different hereditary forms of colon cancer, and the diagnosis and treatment of colon cancer.

General Cancer Information

This free 24-hour helpline provides referrals for local counseling services throughout the United States. This referral program aims to connect cancer patients and their caregivers to psychiatrists, psychologists, nurses, social workers and counselors skilled in the management of cancer-related distress. To request a confidential referral, please call:

1-866-276-7443 or you may send an e-mail to

An online resource for adult cancer patients and the parents of children with cancer who want to learn more about preserving fertility before and during cancer treatment, and protecting hormonal health after treatment. This website also provides information and guidance to oncologists, endocrinologists, and other health care providers concerned with the reproductive health of cancer patients and survivors. With easy to use checklists and flow charts, is an excellent resource for patients and providers.

This website is provided by the Oncofertility Consortium, a nationwide initiative dedicated to providing improved fertility preservation options for people diagnosed with cancer who must undergo treatments that threaten their fertility. The website discusses broad options for fertility preservation though informative Q & As, animations, and videos. Since every individual experiences cancer treatment differently, the information is meant to be used as a guide for discussions with your doctor before cancer treatment begins.

The National LGBT Cancer Network is the first program in the country to address the needs of all LGBT people with cancer and those at risk. The main goal of the program is to educate the LGBT community about increased cancer risk and the importance of screening and early detection.

This non-profit will assist cancer survivors in locating free yoga classes at a studio in their area. Free passes usually range from 10 weeks to six months.To be eligible you must have finished treatment for cancer, be over the age of 18, discussed yoga with your doctor, and make a commitment to the practice of yoga. Yoga studios can also donate studio time to the Share-A-Mat program on this site.

The Lance Armstrong Foundation and the YMCA have joined forces in promoting wellness after cancer treatment. This partnership aims to assist cancer survivors to return to their physical activity after treatment. Currently, there are limited YMCA sites across the country that offer this program; however, more sites are scheduled to be added this year. Keep checking the website for a site near you.

This website offers a large selection of books, videos, and audio tapes to assist adults and children of all ages with difficult subjects such as grief, death and dying, and a serious illness such as cancer. All resources have been professionally reviewed and selections can be ordered directly from this site.

Camp Kesem is a group of summer camps run by college students for children who have a parent who has had cancer. They have locations throughout the US and are designed to give children a chance to “just be kids” while gaining support from peers with similar experiences. Camp Kesem MIT is staffed by MIT students, and is free and open to children ages 6-16 from the New England area. It will be held in August at Camp Merrowvista in Center Tuftonboro, NH. Applications are available on the website and are accepted on a first-come, first-serve basis.

This section of the NCI website contains information about clinical trials including what they are, who sponsors them, the risks and benefits of participating in a clinical trial, and how to find a clinical trial.

“I’m Too Young For This!” Cancer Foundation strives to improve the survival rates and provide a meaningful quality of life for young adult cancer survivors. They provide public awareness programs, on/offline peer support, social networking, young adult blogospheres, information on scholarships, community development, conference planning, medical education and college campus activities.

This portion of the American Cancer Society website focuses on “Sexuality for Women and their Partners”. It provides a very complete and easy-to-read overview of the answers to common questions about sexuality, the effects of cancer treatment on sexual functioning, and ways of dealing with changes in sexual functioning after cancer treatment. It also includes a special section for single woman with cancer.

A great website full of resources on pheochromocytomas and paragangliomas for both patients and health care professionals. The PheoPara Alliance is an organization made up of physicians, patients, and support individuals, which provides a broad up-to-date and easy to follow wealth of information, news and events.

Is a patient-run organization with an active role in the community and media. The website offers a list of resources, including patient stories, newsletters and an event calendar. A great place for patients to connect with other patients affected with pheochromocytomas and/or paragangliomas.

This American Cancer Society (ACS) website includes information about speaking to a child about a cancer diagnosis. This specific link provides information to help children cope with a cancer diagnosis in a close relative and includes tips from actual cancer survivors. Additional reading material is also available on this topic through local ACS chapters.
This site will lead you to The Children’s Oncology Group “Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers”. These detailed guidelines 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 you review the information in conjunction with a doctor familiar with long-term follow-up for childhood cancer survivors.
This website entitled 'Thinking about Complementary and Alternative Medicine' is sponsored by the National Cancer Institute and focuses on cancer-related medicines and treatments. The site provides definitions and an overview of several treatments, including Tai Chi, Reiki and Reflexology. You can order a free copy by calling 1-800-4-CANCER (1-800-442-6237). The more general site is If you are looking for more specific, evidence-based information, try
Kids Konnected is a non-profit organization whose mission is to provide education and support for children who have a parent with cancer or have lost a parent to cancer.  The group offers online support from other children, resources for different age groups by mail, and in-person meetings throughout the country.  Check out to learn more about resources near you.

Quitting smoking is one way of significantly reducing one’s risks for a number of cancers and diseases. This website was created by the National Cancer Institute (NCI) to provide resources to help individuals quit smoking including an interactive online guide to quitting, information about national and local telephone support lines (national 1-877-44U-QUIT; CT 1-866-END-HABIT), access to instant messaging support, and additional publications and brochures about quitting.

This newly renamed and reconfigured website provides clear, concise “oncologist-approved” medical information from the American Society of Clinical Oncologists (ASCO). There are many different resources including information about specific types of cancer, listings of upcoming events, information about clinical trials, a medical dictionary, and a database with information about various medications. There are also discussion groups on specific types of cancer and more general topics (i.e. emotional issues, practical issues, spirituality, and family and friends).

This is the website of the National Coalition for Cancer Survivorship, a national advocacy group formed in 1986. It provides links to online cancer resources on a variety of different topics including support groups, pain management, information about specific types of cancer, and clinical trials. They also offer an audio program that is designed to help individuals who have been recently diagnosed with cancer deal with their diagnosis and treatment decisions.

This is the website for Cancer Care, a nonprofit organization that provides free professional help for people with cancer. Their website offers many educational and support resources. Support groups and individual counseling by a network of social workers are available online, by telephone, or onsite (NY, NJ, and CT locations). A wide variety of articles and lists of resources on different types of cancer, and issues in cancer management are also available. Sample topics include bereavement and grief, sexuality and breast cancer, caregiver resources, pain management, and finding financial assistance.


This is the website for the American Cancer Society (ACS). It provides a wealth of information about cancer and about upcoming events sponsored by the ACS.


This is the main menu page of the National Cancer Institute webpage. It allows you to access a broad range of information including cancer treatment, research and clinical trials, support services, and publications.

This website provides information about the effects of cancer treatments on fertility and the various options for preserving fertility. It provides information for men, women, and adolescents including a list of questions that patients can ask their doctors when discussing cancer treatment and fertility. This nonprofit organization also provides a network for patients to speak to other individuals who are dealing with the same questions and concerns.

This website produced by the Emory University Department of Biology provides a thorough overview of cancer biology including normal cell biology and changes in the cell that lead to cancer. Detailed information about cancer diagnosis and treatment, new areas of research, and clinical trials is also included. Although all technical terms are defined in a glossary and excellent illustrations accompany the text, some readers may find the text difficult to understand due to the level of detail and the use of technical terms.

Diethylstilbestrol (DES) is a medication that was prescribed to pregnant women from 1938-1971, primarily to prevent miscarriages. This website from the Centers for Disease Control and Prevention (CDC) provides current information representing over 30 years of research on the health risks associated with DES exposure. It has separate sections for women who took DES during pregnancy and for men and women who were exposed to DES before birth (in the womb).
Specs for Little Heroes is an organization started by a local family whose 4-year-old son lost his eye to retinoblastoma, a rare childhood eye cancer that affects hundreds of American children every year. Children with retinoblastoma often receive chemotherapy, surgery to remove their affected eye, and/or other treatments. These children and their families face many physical, emotional, and financial challenges. These children need to take lifelong precautions including wearing expensive protective glasses to prevent further eye injuries and blindness. This organization raises money to provide free protective eyewear to children with retinoblastoma. 

Ovarian Cancer

This is the website of the Ovarian Cancer National Alliance and it provides information and support for patients with ovarian cancer and their families.


*Please also see BRCA1/BRCA2 Resources above


Family History Research

In November 2004, several offices and agencies within the U.S. Department of Health and Human Services launched a new national program called “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 information and a tool called “My Family Health Portrait” to help individuals organize, create, and print their family health history. This tool is available as web-based or downloadable software in English and Spanish.

This page provided by the National Society of Genetic Counselors gives tips for collecting and recording your family history. If you are interested in obtaining more information about researching your family history, please see “Researching your family history” on our website ( as well.

Directories and Databases

This site is an indexed directory of over 100,000 genealogy sites in over 150 categories. Some categories of interest include a beginner’s section, supplies (including forms), “how to”, census related sites, search engines, and software and computers.

This site is run by a volunteer organization whose mission is to make census records and other genealogical resources available on the Internet. It includes a section called “help for researchers” which has helpful advice and links to other sites for beginners. It also contains searchable databases of transcribed public domain records including census records, wills, and public documents.
If you can get beyond the distracting advertisements, this site offers a variety of helpful "how to" articles and an indexed directory to numerous genealogy sites including a "beginner's corner" section. One particularly useful article gives hints for using general search engines for genealogical research. This article can be found at

This site, run by the Church of Jesus Christ of Latter-Day Saints, allows you to search many of the records in their vast database including vital records, census records, and the social security death index. You can also order additional genealogy research materials that are not currently available in their online database.

Free Genealogy Forms

Downloadable forms are available for free on this site. The site also has numerous online tools, databases, and message boards but some services require a subscription fee for access.

Genealogy-Specific Search Engines

This site includes a search engine called the "internet family finder" which allows you to search an index of websites, family archives, and online data for your family surnames.

Vital Records

This site provides instructions, addresses, phone numbers, and prices for obtaining copies of vital records from each state and territory.

General Genetics and Cancer Genetics

This website hosted by the National Human Genome Research Institute provides information about DNA Day events and also has links to a wealth of genetic education resources. There are fact sheets, teaching tools, tips for speakers, an online education toolkit, genetic education modules, and links to other online resources.
Medical illustrators at The Hospital for Sick Children in Toronto, Canada developed this illustrative website that covers the basics of genetics, as well as the brain, heart, lungs & airway and skeleton. This site is a must-see for children and adults who want a well organized, innovative and beautifully designed guide to genetics and these organ systems. Genes, chromosomes and inheritance are completed and the genetics & health section is being developed. What a great resource for any student working on a school project or any adult who wants to understand the ins and outs of genetics!
Fascinating animated multimedia exhibits captivate viewers as they are guided through segments on the basics of heredity, genetic disorders, eugenics, DNA sequencing, and cancer and plant genetics.  Hosted by the Dolan DNA Learning Center at Cold Spring Harbor Laboratory, this site is dedicated to informing students, teachers, and families about the concepts of genetics.  The Learning Center also offers public workshops, exhibitions, presentations, field trips, summer day camps, and teacher training.

This site for the Australian Centre for Genetics Education contains numerous fact sheets on a variety of topics in general human genetics, genetic technology, and clinical genetics. Available topics include genes and chromosomes, genetic counseling, genes and cancer, hereditary breast and ovarian cancer, hereditary colon cancer, forensics, gene therapy, and cloning. The fact sheets are very detailed but easy to understand due to the use of simple language and plenty of pictures.

The Genetic Science Learning Center is an excellent resource that provides innovative and effective genetic science learning programs for teachers, students, and the public. This site should not be missed by anyone with an interest in better understanding the field of genetics.

This is a glossary of genetic terminology, which is run by the National Human Genome Research Institute.


This is the website of the Genetic Alliance, which is a coalition of genetic support groups. It has information about different genetic diseases, issues related to genetic diseases (i.e. ethics, discrimination, etc.), and a searchable database of genetic support groups.

Aetna sponsors this website but its information content is provided by Harvard Medical School. It includes basic information on genetics, the human genome project, and genetic testing. The ‘Decision Guide: Breast and Ovarian Cancer’ section includes information about breast and ovarian cancer, BRCA1 and BRCA2, the genetic counseling and testing process, possible test results, and the available screening and prevention options.

This is the Genetics Education Center website of the University of Kansas Medical Center and it is an amazing resource for educators and individuals interested in learning more about genetics. It provides access to hundreds of resources including books, videos, lesson plans, activities, and glossaries on a variety of subjects related to basic genetics, genetic diseases, and the Human Genome Project.

The “Guide to Understanding Genetic Conditions” is produced by the U.S. National Library of Medicine. It currently contains information about over 200 genetic conditions with plans to continually expand the list of conditions. It also includes a glossary of genetic terms, an introduction to basic genetics, and resources for more information on a variety of topics for patients and families, educators, and individuals interested in genetics.

A fun, simple introduction to genetics for children (and adults) using drawings and characters, this website introduces the basics of cell structures and DNA as well as explaining new technologies (i.e. cloning and genetic engineering). There are also many links to other sites for science-related information.
GEMSS (Genetics Education Materials for School Success) is a website that was developed by the New England Genetics Collaborative (NEGC) to provide information and materials to help teachers and parents better understand and address the needs of children with genetic conditions and help them succeed in the classroom. They currently provide information on various areas that may affect school life (e.g. medical/dietary needs, educational supports, school absences and fatigue, etc.) for 10 genetic conditions (including Down syndrome, Neurofibromatosis Type 1, Fragile X) with plans to add information about more conditions in the future.
This website for the National Coalition for Health Professional Education in Genetics provides useful tools and information about genetics for healthcare providers. However, some of the information and tools provided are also patient-friendly including a free form and information for collecting family history as well as information about the Genetic Information Non-discrimination Act (GINA). 

Genetic Counselors, where to find one in your area


This is the “Find A Genetic Counselor” database and search tool for the National Society of Genetic Counselors. With this tool you can search for genetic counselors by State, City, Counselor's Name, Institution, Work Setting, Type of Specialty or Zip Code.


This is a directory presented by the National Cancer Institute and it is specifically for finding 


genetic counseling services.

Insurance Legislation/Genetic Discrimination

This website hosted by the Coalition for Genetic Fairness provides an overview of the Genetic Information Nondiscrimination Act (GINA) including its history, the protections provided, and additional resources. Content for this website is still being contributed by experts in the field so check back for additional information.

Summary chart of what is and is not covered under the Genetic Information Nondiscrimination Act (GINA) prepared by the Genetic and Public Policy Center.

This website provides a good overview of the current federal legislation as well as the various bills that have been proposed and recommendations that have been made for future legislation. It also has a policy and legislation database that is searchable by content type (i.e. type of law), topic of interest, and source (i.e. state or country).

Library of Congress entry for the complete text of the Genetic Information Nondiscrimination Act (GINA) bill (H.R. 493).

Sexual Functioning After Cancer or Surgery

This website of the American Association of Sex Counselors, Educators, and Therapists

offers a ‘Locate a Professional’ link to find a sex educator, counselor, or therapist in your area.

This section of the National Cancer Institute (NCI) website focuses on sexuality and reproductive issues. It provides a good overview of the sexual side effects from cancer treatment and offers suggestions for addressing these side effects.

This portion of the American Cancer Society website focuses on “Sexuality for Women and their Partners”. It provides a very complete and easy-to-read overview of the answers to common questions about sexuality, the effects of cancer treatment on sexual functioning, and ways of dealing with changes in sexual functioning after cancer treatment. It also includes a special section for single woman with cancer.

This Lance Armstrong Foundation website has separate pages for men and women that provide detailed outlines of the physical changes that can occur after cancer, the cancer treatments that may be responsible, the changes in sexual functioning that may result, and suggestions for coping with these changes.

Many cancer survivors and their partners are faced with challenges of coping with emotional and physical changes in their intimate lives. The American Cancer Society has developed a free online class exploring self-esteem and intimacy issues. The online course touches on myths and intimacy, self-esteem, emotional and physical intimacy, issues for the single person, a chapter on ‘ask your doctor’, a tailored chapter specifically for the caregiver and additional resources for patients and their caregivers.

Online resource approved by the American Society of Clinical Oncology for patients looking for information on the possible side-effects that cancer and cancer treatments may have on sexual and reproductive health, such as pregnancy, fertility, menopause, body image and sexual dysfunction. This website allows patients to focus on specific issues that they are most concerned about and provides additional links and further resources in each area.