Patient and Family Resources
Links to Hereditary Cancer Risk Information and General Cancer Resources
Links to Advocacy, Education and Support Resources
American Cancer Society
The American Cancer Society’s page on genetics and cancer includes information about genes and cancer,
family cancer syndromes, and genetic testing.
ASCO Cancer Net
American Society of Clinical Oncology’s Cancer Net
patient information source brings the expertise and resources of
ASCO to people living with cancer and those who care for and about them. The
genetics of cancer page reviews the basics of cancer genetics. The hereditary
cancer-related syndromes page provides a comprehensive directory and review
of many specific cancer syndromes.
Bright Pink is a non-profit focused on the prevention and early detection of breast
and ovarian cancer in young women.
Facing Our Risk of Cancer Empowered
FORCE’s mission is to improve the lives of individuals and families affected
by hereditary breast, ovarian, and related cancers. FORCE is a non-profit
voice for the hereditary cancer community, a voice leading to greater
awareness, better medical options, wider access to care, and improved outcomes
Genetic Alliance is a voice of advocacy in genetics, empowering individuals, families, communities,
and organizations to make their voices heard by including stakeholders
from industry, research, healthcare, and public policy.
Genetics Home Reference
Genetics Home Reference is a gene and health condition specific guide and educational resource
for consumer-friendly information on genetic conditions and the effects
of genetic variation of human health.
LFSA provides information, advocacy and support services for individuals and
families with Li-Fraumeni Syndrome.
LFSA supports a consortium of researchers and clinicians to promote optimal
care for the LFS community.
Lynch Syndrome International
LSI is founded and governed by Lynch syndrome survivors, their families, and
clinicians who specialize in Lynch syndrome.
LSI provides support, public awareness, research, and education for Lynch syndrome.
The National Breast Cancer Coalition
National Breast Cancer Coalition is a grassroots advocacy effort in the fight against breast cancer. In
1991, the Coalition was formed with one mission - to eradicate breast
cancer through action and advocacy.
National Cancer Institute
National Institute of Health-National Cancer Institute’s information page describing the genetics of cancer including genetic changes
of cancer, hereditary cancer syndromes, and genetic testing.
National Organization for Rare Disorders (NORD)
NORD is a patient advocacy organization dedication to individuals with rare
diseases and the organizations that serves them. Website includes a directory
of patient advocacy organizations for many cancer syndromes.NORD is committed to education, advocacy, research and patient services.
The National Ovarian Cancer Coalition (NOCC)
NOCC is a non-profit support organization dedicated to raising awareness, promoting
education, and improving the overall quality of life for individuals with
NOCC advocates for improved early detection screening methods, provides funding
of research into ovarian cancer, and ensures comprehensive information
about ovarian cancer.
National Society of Genetic Counselors (NSGC)
NSGC provides a directory to find a genetic counselor by name, state, zip code,
and specialty. As the professional organization for genetic counselors,
NSGC promotes education, research and public policy to ensure the availability
of quality genetic services.
The PTEN Foundation
The PTEN Foundation provides funding for research as well as information,
advocacy and support services for individuals and families with PTEN Hamartoma
Young Survival Coalition (YSC)
YSC is an international non-profit network of breast cancer survivors and
supporters dedication to the concerns and issues that are unique to young women.
YSC offers resources, connection and outreach so women feel supported, empowered