Lynch Syndrome Awareness Day

Each year we recognize Lynch Syndrome Awareness Day on March 22 to increase understanding of one of the most common yet underdiagnosed hereditary cancer syndromes.

In 2026, this occasion focuses on encouraging family history reviews, genetic testing, and increased surveillance for early cancer detection.

Lynch syndrome is not rare, affecting at least 1 in 300 people,
many or most of whom do not even know know they have it

While some people are tested and found to have Lynch syndrome after their family histories raise suspicion, many are not diagnosed until after they've developed cancer and tumor screening has indicated a mismatch repair deficiency. Wouldn't it be better to find out before you
have cancer, so that you can be proactive to prevent it or at least catch it earlier when it can be more effectively treated? This highlights the need to identify the estimated 500,000+ carriers in the U.S. who are unaware of their risk, to the extent that they are interested in learning about their risk.

Early Detection And Prevention

Because the cancer risks associated with Lynch syndrome are elevated but not inevitable, early identification matters profoundly. Surveillance works. Colonoscopies starting at younger ages and performed more frequently can detect precancerous polyps that can be removed or early
cancers that are highly treatable. For some individuals, risk-reducing surgeries may be considered before cancer develops. Aspirin therapy can even be used to reduce colorectal cancer risk in certain patients. In other words, knowledge allows for proactive care rather than
reactive treatment.

It's important to understand that genetic information is not destiny; a positive result does not mean someone will definitely develop cancer or give any prediction as to when it might occur. But it does mean that the risk is higher than average, providing an opportunity to screen
appropriately and thus allow for early detection or even prevention. In this way, it can be very empowering information. Of course it can also be emotionally challenging, with some individuals experiencing anxiety, guilt about passing it to children, fear of discrimination, or uncertainty
about medical decisions. Genetic counseling plays a critical role here in helping people to decide whether to pursue testing in the first place, and if so, interpreting test results accurately and helping people integrate the information into their lives, whether positive, negative, or
uncertain.

Family Communication

Family communication is another key element of Lynch syndrome awareness. Each child of a person with Lynch syndrome has a 50% chance of inheriting the variant, and each sibling has a 50% of having it too. Conversations about testing can be sensitive; some relatives want to know
immediately, others need time to process the information and decide to have testing, and some choose not to find out. It is every person's right to decide, and no one should be coerced into being tested; those at risk are still able to undergo surveillance measures, even if they choose
not to know if their risks are higher than that of the general population. Providing accurate, accessible information and support can help families navigate these discussions thoughtfully, and genetic counselors are particularly effective in these circumstances. You can find a genetic counselor local to you by going toNSGC.org and clicking on "find a counselor."

Medical Equity

Lynch syndrome awareness also intersects with broader conversations about equity in healthcare. Universal tumor screening for colorectal and endometrial cancers has improved detection rates for Lynch syndrome, but implementation varies widely across the country. Ensuring that individuals from all backgrounds have access to genetic evaluation and appropriate follow-up is an ongoing priority.

Next Steps

So what can we do on March 22 and every day? We can start by learning and sharing accurate information about hereditary cancer risk in general, and Lynch syndrome in particular. We can encourage individuals with personal and/or family histories of Lynch syndrome related cancers, especially at younger ages of onset, to pursue genetic risk assessment with their healthcare providers. We can advocate for consistent tumor screening protocols and improved access to genetic counseling. Most important, we can emphasize that awareness saves lives. Early identification of Lynch syndrome allows for tailored screening, earlier detection, and risk-reducing strategies that meaningfully change outcomes. On this awareness day, we honor those living with Lynch syndrome, remember those who have passed away from Lynch-related cancers, and renew our commitment to preparedness and screening.

In Good Conscience

If you are interested in learning more about Lynch syndrome in the setting of a family drama, please read my novel In Good Conscience, which explores the jagged edges of medical ethics, sibling rivalry, family ties, and the inexorable resilience of the human spirit. The main character,
Aidan Sheridan, has the devoted partner, the starring role in a TV series, and the gorgeous beach house overlooking the Pacific in his flashy world of fame, fortune, and scrutiny. But his veil of privacy is mercilessly ripped apart when his carefully guarded but devastating diagnosis
is broadcast on TMZ, threatening to unravel the already fractured mosaic of his dysfunctional family. He blames the well-meaning nurse who, afraid that his illness may be the harbinger of something running in his family, warns him that his relatives may suffer the same fate. As they
all cope with his failing health, Aidan struggles with the loss of control over his life and his narrative. With eloquence and sensitivity, this novel probes the boundaries of empathy and privacy, providing a riveting examination of the intersection between patient confidentiality and a
practitioner's duty-to-warn.

Resources

● AliveAndKickn is a patient-founded hereditary cancer foundation focused on connecting families with research, education, and screening support

● CCARE Lynch Syndrome works specifically to increase awareness and provide educational resources for patients and healthcare providers

● FORCE (Facing Our Risk of Cancer Empowered) is an organization dedicated to improving the lives of individuals and families affected by hereditary breast, ovarian, and related cancers, including Lynch syndrome

● Lynch Syndrome Center at Dana-Farber Cancer Institute offers resources for education and community support and maintains an extensive Video Library covering topics from genetics 101 to diet and exercise 

● Lynch Syndrome International (LSI) is a global community led by survivors and specialists that provides support, raises public awareness, and funds research.

● Lynch Syndrome Screening Network (LSSN) promotes routine screening for Lynch syndrome in all newly diagnosed colorectal and endometrial cancers

● National Society of Genetic Counselors (NSGC): A tool to find certified genetic counselors
who can help interpret test results and manage family risk