Support Organizations

The following organizations provide helpful information for those affected by hereditary colon cancer syndromes. Click HERE to find a provider near you who specializes in treating families with hereditary colon cancer syndromes.

​​​1 Up on Cancer - This site is for you if you want to look cancer in the eye and not be afraid – or at least feel much less afraid.

American Cancer Society - Your American Cancer Society is in your corner around the clock to help you stay well and get well, to find cures, and to fight back.

Beating Bowel Cancer - Dedicated to saving lives by working in partnership with individuals, local communities, clinical communities and government to improve public awareness of bowel cancer and to increase the rate of early diagnosis.

Cancer and Careers - Cancer and Careers empowers and educates people with cancer to thrive in their workplace by providing expert advice, interactive tools and educational events. Through a comprehensive website, free publications, career coaching, and a series of support groups and educational seminars for employees with cancer and their healthcare providers and coworkers, Cancer and Careers strives to eliminate fear and uncertainty for working people with cancer. informs more than 250,000 visitors per year, providing essential tools and information for employees with cancer.​ - CancerConnect is a unique online network for people with cancer and their caregivers. This dedicated social network provides a safe and secure environment for individuals interested in cancer to learn, support, and connect with others who have similar issues and concerns.

Colon Cancer Alliance - The Colon Cancer Alliance (CCA) is a community that provides hope and support to patients and their families while saving lives through screening, access, awareness, advocacy and research.

Colon Cancer Alliance for Research and Education for Lynch Syndrome - Efforts are focused on educating individuals and health care providers about Lynch Syndrome. Through education we can increase the awareness of Lynch Syndrome, identify affected individuals, and then diagnose cancers at their earliest possible stage. This program can significantly improve the life and longevity of affected individuals.

The Colon Club - Their main goal is to educate as many people as possible, as early as possible, about colorectal cancer in interesting and out-of-the-box ways. Our wishes are for people to have “colon talk” in their everyday lives, to know the risk factors and symptoms, and to get screened when it is appropriate for them.

Desmoid Tumor Research Foundation - DTRF's website provides information and helps direct them to other sources for information and support.

FAP Gene Support Group - This web site was started in 2004 by Mick Mason in Melton Mowbray Leicestershire when he realised there was a need for information on FAP. This information is from U.K. sources which are reliable, non-medical, up to date and easily understood by patients.

Fight Colorectal Cancer - FightCRC is the leading national colorectal cancer advocacy organization empowering survivors to raise their voices, training advocates around the country, and educating lawmakers and pushing them for better policies.

FightCRC offers support for patients, family members and their caregivers, and we serve as a resource for colorectal cancer advocates, policymakers, medical professionals, and healthcare providers. Additionally, FightCRC does everything they can to increase and improve research—at all stages of development and for all stages of cancer.

Genetics Alliance - Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.


The Global Genes Project - The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. and promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™.


I Have Lynch Syndrome, Inc - The mission of I Have Lynch Syndrome, Inc., is to save lives through education and raising awareness about Lynch among the global medical community and the general public. Ihavelynchsyndrome,inc. is a registered charitable organization in Illinois and tax-exempt under Internal Revenue Code Section 501(c)(3).

Imerman Angels - IA provides personalized connections that enable one-on-one support among cancer fighters, survivors and caregivers.

LIVESTRONG - LIVESTRONG finds new ways to raise awareness, increase outreach and facilitate collaboration in an effort to improve the cancer experience.

Lynch Syndrome International - The primary mission of Lynch Syndrome International (LSI) is to serve our 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.

National Comprehensive Cancer Network - The primary goal of all NCCN initiatives is to improve the quality, effectiveness, and efficiency of oncology practice so patients can live better lives.

National Organization of Rare Diseases - The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

Polypeople - A support group who aim to provide support and information to anyone whose lives are or have been affected by Familial Adenomatous Polyposis and Gardner’s Syndrome (FAP) plus Peutz Jegher’s Syndrome, Juvenile Polyposis and MYH (Mut Y Homolog) whether patient, family, friend or those with an interest in the Gene. - supports a global network of survivors, caregivers, providers and advocates to ensure that no young adult goes unaware of the age-appropriate resources they are entitled to so they can get busy living.

United Ostomy Associations of America, Inc. - The United Ostomy Associations of America, Inc. (UOAA) is a national network for bowel and urinary diversion support groups in the United States.