Fight Lynch Syndrome

Colon Cancer Alliance for Research and Education for Lynch Syndrome

What is Lynch Syndrome?

Lynch Syndrome is a hereditary disorder that affects up to 1.2 million people in the United States. It increases the risk of colon, uterine, ovarian, and other cancers. These cancers often occur at a young age.

Our Mission

Educate the public and healthcare professionals about Lynch Syndrome and to help fund research for a cure for this disease.

Are you at risk?

If multiple family members have cancer and at least one person is younger than the age of 50, please learn more about Lynch Syndrome.

Resources for Families

Information for Medical Staff

CCARE Events and News

Congratulations to Dr. Asaf Maoz, MD and his team at the Dana-Farber/ Harvard Cancer Center. They are the winner of this year’s CGA-IGC / CCARE Lynch Syndrome research grant at the 30th annual CGA-IGC conference in St. Louis today, October 9, 2025. His study, Leveraging Urine cfDNA for Urinary Tract Surveillance in Lynch Syndrome, will test an improved method to identify cancers of the urinary tract (the bladder and drainage tubes). While Lynch syndrome has been widely known to cause colorectal and uterus cancers, it is also linked with urinary tract cancers. This is especially true for people with the MSH2 abnormality.

Risk of Cancer by age 80

Site	MLH1	MSH2 EPCAM	MSH6	PMS2	General Population
Renal Pelvis/Ureter	0.2%-5%	2.2%-28%	0.7%-5.5%	<1%-3.7%	Not available
Bladder	2%-7%	4.4%-12.8%	1.0%-8.2%	<1%-2.4%	2.3%
Prostate	4.4%-13.8%	3.9%-23.8%	2.5%-11.6%	4.6%-11.6%	12.6%

March 22, 2025 - Lynch Syndrome Awareness Day.
We are celebrating at the 10th annual LYNKED IN Conference at the Dana-Farber Cancer Institute in Boston.

Lynch Syndrome Research Studies

Physicians at the Dana-Farber Cancer Institute at Harvard University are creating a registry of Lynch syndrome Patients. Click here for more information.

Lynch Syndrome Family Communication Study

If you are over 18 years old and were recently diagnosed with Lynch syndrome, please consider helping out on improving Family Communication with a research project from the University of Utah Graduate Program in Genetic Counseling and the Huntsman Cancer Institute. It is online, will take 20-30 minutes, and eligible participants may receive a $15 Amazon gift card. If interested, Email Dr. Lingzi Zhong at Lingzi.zhong@hci.utah.edu.

IGNITE-TX (Identifying individuals for Genetic Testing Treatment for hereditary cancer) is conducting a study to help families share hereditary cancer information with relatives and make decisions about genetic testing. If you or someone in your family has a BRCA1 or BRCA2 mutation or a Lynch syndrome mutation, you may be eligible to participate. Click here for more information.

Lynch Syndrome Risk Calculator

Researchers at Harvard University developed an on-line Lynch syndrome risk calculator called PREMM. To do a quick calculation based on your family history click the following link.