Advancing Awareness for Lynch Syndrome
Join us in our mission to spread Awareness and Education about Lynch Syndrome
Empowering individuals and the medical community with knowledge and useful resources to help navigate those living with Lynch Syndrome.
What is Lynch Syndrome?
What Is Lynch Syndrome?
Lynch Syndrome is the most common hereditary cancer syndrome, affecting approximately 1 in 279 people—yet more than 95% of those who carry it are unaware.
It is caused by inherited genetic mutations in the body’s DNA mismatch repair (MMR) genes—most commonly MLH1, MSH2, MSH6, PMS2, or EPCAM. These genes normally help fix errors in DNA, but when they are not working properly, the risk of cancer increases significantly.
What cancers are associated with Lynch Syndrome?
Individuals with Lynch Syndrome have a higher lifetime risk of developing several cancers, including:
Colorectal (colon) cancer
Endometrial (uterine) cancer
Ovarian cancer
Stomach cancer
Small bowel cancer
Biliary tract cancer
Urinary tract cancers (including bladder and renal pelvis)
Brain cancer
Certain skin cancers
These cancers often develop at younger ages than in the general population and may occur across multiple generations within a family.
Why does this matter?
Lynch Syndrome is highly actionable.
With the right knowledge, individuals can take steps toward:
Early and more frequent cancer screening
Preventive care strategies
Genetic counseling and testing
Protecting family members through cascade testing
Early detection doesn’t just save lives—it can save entire families.
In simple terms
Lynch Syndrome is an inherited condition that increases cancer risk—but when identified early, it provides a powerful opportunity to prevent cancer or catch it at its most treatable stage.
How Common Is Lynch Syndrome?
Lynch Syndrome is far more common than most people realize. In fact, it is one of the most prevalent hereditary cancer syndromes in the world. Current estimates show that approximately 1 in 279 people carries a Lynch Syndrome–related gene mutation.
In the United States alone, this translates to over one million individuals living with Lynch Syndrome today.
Yet the most urgent challenge lies in awareness. Despite how widespread it is, about 95% of people with Lynch Syndrome do not know they have it. This lack of recognition leads to missed opportunities for early detection, proactive screening, and potentially lifesaving interventions.
Increasing awareness, improving access to genetic testing, and educating both the public and medical community are essential steps toward closing this gap—and saving lives.
Why Awareness Matters
Awareness is the key to saving lives. Lynch Syndrome significantly increases the risk of several cancers, yet the majority of those affected have no idea they are at risk. When individuals understand their family history and receive genetic testing, early detection becomes possible. Screening guidelines for Lynch Syndrome are proven to reduce cancer risk and catch cancers at earlier, more treatable stages.
Raising awareness not only empowers individuals—it strengthens families, guides physicians, and supports future generations.
At Lynch Syndrome Awareness, our mission is to close the knowledge gap, promote lifesaving education, and ensure no one faces hereditary cancer unknowingly.
Applied Knowledge is Power in Early Detection and Prevention
One of the most important aspects of Lynch Syndrome is that it is a hereditary condition. When an individual inherits a mutation in one of the mismatch repair (MMR) genes—such as MLH1, MSH2, MSH6, Epcam or PMS2—their risk for several types of cancer increases. But knowledge alone is not enough. What truly makes a difference is applied knowledge: using this information to take proactive steps. Understanding one’s genetic risk empowers individuals and their healthcare providers to initiate earlier, more frequent screenings and prevention strategies. This combination of awareness and action can lead to earlier detection, more effective treatment, and dramatically improved outcomes.
This website is intended for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Please talk to your healthcare provider about any questions or concerns you may have regarding your health.
Join Us In Our Mission to Spread Awareness and Education for Lynch Syndrome
Your support can make a difference! Whether you choose to donate, volunteer, participate in clinical trials, research studies, or help spread the word, every action counts in our mission to raise awareness about Lynch Syndrome. Please join us in providing awareness and education. Together, we can make a difference.