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Lynch Syndrome Program

  • Contact us for an appointment if you or a family member has Lynch Syndrome.

    Lynch syndrome is a genetic condition that increases the risk of certain cancers (especially colon and uterine cancer). So far, five genes that are part of or associated with the DNA mismatch repair process have been shown to cause Lynch syndrome: MLH1, MSH2, MSH6, PMS2, and EPCAM (also known as TACSTD1). In the United States, about 140,000 new cases of colorectal cancer are diagnosed each year, and approximately 3 to 5 percent of these cancers are caused by Lynch syndrome.

    The syndrome was characterized in 1966, and given the name by Dr. Henry T. Lynch in 1985. Researchers in our Program have been studying Lynch Syndrome since 1995. Screening and genetic testing is recommended for individuals who may be at risk. Screening usually begins with a cancer risk evaluation, where patients will meet with a genetic counselor and a doctor who specializes in cancers that can be inherited. They will ask about your family's history of cancer and what this means. If genetic testing is recommended, a blood sample would be taken and sent to a lab for evaluation.

    If you are found to have Lynch Syndrome or a genetic mutation that puts you at increased risk for cancer, you may receive ongoing care from a physician, such as regular cancer screenings like colonoscopies or other exams. Surgeons, oncologists, radiologists, and social workers are also available to talk with you and your family.

    LYNKED IN Lynch Syndrome Conference

    LYNKED IN Lynch Syndrome conference banner

    LYNKED IN is an annual, one-day, educational conference for individuals with Lynch syndrome, their families, and caregivers, hosted by Dana-Farber's Center for Cancer Genetics and Prevention, and with the goal of connecting and empowering Lynch Syndrome families.

    This program provides attendees with updates on guidelines for screening and prevention, strategies for communicating with your family, and advances in the treatment of Lynch syndrome. The last conference was held on March 24, 2018.

    View videos from the Lynch Syndrome Patient Conference 2017.

    You may also view presentations from the 2016 conference.

    Team Lynch Syndrome

    Team Lynch Syndrome (formerly Team Sandi) is our Center's team for Dana-Farber's Jimmy Fund Walk, now in its fourth year. Since 2013, Team Lynch Syndrome has raised over $62,000 for Lynch syndrome research at Dana-Farber. One hundred percent of the proceeds raised by our team directly support Lynch syndrome research and national education efforts to raise awareness of this rare disorder, including funding our annual LYNKED IN Lynch Syndrome Conference.

    The team was founded to honor Sandi Braune, a patient of Dr. Sapna Syngal's, who passed away from colon cancer in 2003 shortly after discovering she had Lynch Syndrome. Team Lynch Syndrome comprises Lynch syndrome previvors (patients who have not had cancer but have tested positive for the gene), Lynch syndrome cancer survivors, non-carrier relatives, friends, and Dana-Farber staff.

    Team Lynch Syndrome

    Follow Team Lynch Syndrome on Facebook

    Talks and lectures

    View videos of Dr. Syngal at the Familial Cancer Congress organized by the Spanish National Cancer Research Centre (CNIO) in Madrid about the importance of a healthy lifestyle for people affected by Lynch syndrome and the best way to prevent colorectal cancer in people affected by this genetic disorder.

    PREMM model

    The PREMM1,2,6 model is a clinical prediction algorithm designed and published by our Gastrointestinal Cancer Genetics and Prevention Program to estimate the cumulative and individual probabilities that an individual is an MLH1, MSH2, or MSH6 mutation carrier. Mutations in these genes are found in most patients with Lynch syndrome. This tool is used by health care professionals and individuals around the world.