Useful Resources

Henry Lynch’s story: The Frustrations of Families: Henry Lynch, Heredity, and Cancer Control, 1962–1975 - The Henry Lynch Story
GeneReviews Genetic counseling for patients and families with specific inherited conditions.
National Cancer Institute Information on genetic testing
Colon Cancer Alliance National patient advocacy organization
Centers for Disease Control Information on Lynch Syndrome
National Comprehensive Cancer Network Lynch Syndrome guidelines
Genetic Alliance Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.
Bethesda Criteria The revised Bethesda Guidelines for testing colorectal tumors for microsatellite instability (MSI).
National Cancer Institute Slide show about genetics and gene testing:
Genes in Life A website from the Genetic Alliance with information about genetics, genetic disease and genetic testing
Colonoscopy Assist A colon cancer screening program for people who are uninsured
GINA Title II of the Genetic Information Nondiscrimination Act of 2008 (GINA), which prohibits genetic information discrimination in employment, took effect on November 21, 2009.
Coalition for Genetic Fairness Coalition HomeAdvocating for Genetic Information Nondiscrimination
Genetics & Public Policy Center President Bush signed the Genetic Information Nondiscrimination Act (GINA) of 2008 into law on May 21, 2008. his site aims to help patients, health care providers, insurers, and employers understand their rights and obligations under the new law.
HIPAA The Office for Civil Rights enforces the HIPAA Privacy Rule, which protects the privacy of individually identifiable health information.
National Society of Genetic Counseling The National Society of Genetic Counselors (NSGC) promotes the professional interests of genetic counselors and provides a network for professional communications.
Lynch Syndrome International ( LSI) The 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.
National Cancer Institute Search for Cancer Clinical Trials at National Cancer Institute (NCI)
CCARE Our mission is to educate the public and health care professionals about Lynch syndrome and to help fund research for a cure for this disease.
I Have Lynch Syndrome A blog with a wealth of information and resources on Lynch syndrome.