About Us

 MISSION STATEMENTThe 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. LSI, an all volunteer organizati...

For Professionals

Photo Courtesy of Marco Pompei Medicine is not merely a science but an art. The character of the physician may act more powerfully upon the patient than the drugs employed. -~ Paracelsus       Understanding the busy schedule of the professional, the following pages are quick guides forprofessionals to acquaint them with the basic knowledge of Lynch syndrome and how to diagnoseand manage the disord...

Straight Talk

  Photo Courtesy of Bilal Kamoon {slider=What is Lynch syndrome?} Lynch syndrome, also known as hereditary nonpolyposis colorectal cancer (HNPCC) predisposes individuals to an approximate 80% chance of contracting colorectal cancer during one's lifetime as well as an up to 60% chance of contracting endometrial cancer.  Diagnosed individuals possess a higher than average risk of...

LSI Library

    WELCOME TO THE LSI LIBRARY! Offering a host of resources on Lynch syndrome.     GUIDELINES:   Revised guidelines for the clinical management of Lynch syndrome (HNPCC): recommendations by a group of European experts.  Gut. 2013 Jun;62(6):812-23. doi: 10.1136/gutjnl-2012-304356. Epub 2013 Feb 13. EGAPP Recommendations  Translation Updated July, 20...


 Thank you for considering donating to LSI.Lynch Syndrome International is a 501 (c)(3) public charity, IRS Tax ID 27-0571530. All donations are tax-deductible as allowed by law.LSI is an all volunteer organization and no person involved with it is compensated for their good efforts. As such, our operational costs are minimal and all donations are utilized toward project based efforts. One hundred...

Survivors and Previvors

                              Photo - Courtesy of Cops for Cancer Courage is not the absence of fear but rather the judgment that something else is more important than fear.  ~Ambrose Redmoon  SURVIVAL 101 This section is for us, who are at high risk for Lynch cancers, as well as for those who care for us.  These pages are intended as a road map, created by those who have been through the process ...

The Family History

.style1 { text-align: center; }THE VERY FIRST LINE OF DEFENSE IN THE SURVIVAL OF LYNCH SYNDROME IS KNOWING ONE'S FAMILY HISTORY Lynch syndrome is inherited through families in an autosomal dominant manner.  This means an inherited mutation of the mismatch repair gene, coupled with a normal gene will produce children that have an estimated 50-50 chance of contracting Lynch...

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  • The Family History


Lynch Syndrome Conference and Family Reunion

Presented in Collaboration with

Creighton University, Health Sciences Continuing Education


Save the Date, June 21, 2014


Click for More Details



Lynch Syndrome International

Lynch Syndrome noun; an hereditary disorder caused by a mutation in a mismatch repair gene in which affected individuals have a higher than normal chance of developing colorectal cancer, endometrial cancer, and various other types of aggressive cancers, often at a young age – also called hereditary nonpolyposis colon cancer.” (HNPCC)


The Mutation Of A Single Gene Dramatically Increases The Chances Of Contracting Cancer

The mutations of specific mismatch repair (MMR) genes including but not limited to MLH1, MSH2, MSH6, PMS2, and EPCAM-TACSTD1 deletions  are responsible for Lynch syndrome. These genes work in repairing mistakes made when DNA is copied in preparation for cell division. The defects in the genes disallow repair of DNA mistakes and as cells divide, errors stack and uncontrollable cell growth may result in cancer.

Confronting The Risk

Having no gender, ethnic or cultural preferences, Lynch syndrome targets families, predisposing them to cancer at a younger than average age. Children of a Lynch syndrome parent possess a 50% risk of acquiring a mutation. During their lifetimes, those diagnosed face up to an 85% risk of contracting colon cancer and, as well, women have up to a 65% risk of contracting endometrial cancers. An increased risk exists of contracting a number of other cancers including those of the stomach, pancreas, kidney/ureter tract, hepatobiliary tract, gastric tract, prostate, ovaries, gall bladder duct, brain, small intestine, breast and the skin. 

In the United States alone, 600,000 to 1,000,000 people are projected to be affected by the Lynch syndrome.  Less than five percent (5%) are currently diagnosed.  Lynch syndrome is not a rare condition but an extremely underdiagnosed condition in which the cancers it creates are often quite preventable.

Lives Can Be Saved Through Awareness And Testing

Despite the odds, immense hope exists; thanks to modern technology and the passionate and diligent efforts of dedicated researchers and medical professionals. Though no cure has yet been discovered, through genetic testing, the risk for cancer in families can be identified. By exercising preventative measures (early diagnosis, surveillance and treatment), enhanced quality of life and longevity can be achieved and individuals and families can be protected from cancer.




First Line of Defense


Lynch syndrome is inherited through families. The first step of diagnosis of Lynch syndrome, in order to obtain provision of early and potentially life saving prevention measures, is by researching and documenting a comprehensive family history to present to one’s physician for assessment.


Second Line of Defense


The only known method of accurately diagnosing Lynch syndrome is through genetic testing, the closest thing to a cure which is known today. If the family medical history indicates three family members, two of which are directly related to a third, and who each sustained Lynch cancers, genetic testing should be discussed with one’s physician.


Third Line of Defense


Once Lynch syndrome has been diagnosed, a highly targeted screening and medical management program is essential and may be lifesaving. During routine surveillance screening, tumors may be discovered and are more easily removed or treated before becoming life threatening.





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