Understand your risk. Make informed decisions. Advocate for yourself. Support the research.

MISSION

To support Hereditary Diffuse Gastric Cancer (HDGC) translational research that leads to improvements in the health and well-being of those affected by HDGC, and to provide relevant, reliable information and resources to help individuals and families understand their risk, make informed decisions, and advocate for themselves.

Stomach cancer can be hereditary, sometimes caused by a CDH1 gene mutation.

What is HDGC?

Hereditary Diffuse Gastric Cancer (HDGC) is an inherited cancer syndrome that leads to an increased risk of diffuse gastric cancer and lobular breast cancer in affected families. HDGC is most frequently caused by inherited mutations in the CDH1 gene, although other genes are likely to be involved in some families.

Everyone is born with two copies of the CDH1 gene, one from each of their mother and father. People are at risk of HDGC if they inherited a mutation in CDH1 from either of their parents. When a gene is mutated the function of the gene is disrupted, which leads to increased risk of these cancers. The risk of diffuse gastric cancer for CDH1 mutation carriers by age 80 is reported to be 70% for men, 56% for women, with additional risk of lobular breast cancer in women of 42%.

Is my family at risk?

Your family may be at risk for HDGC if there are instances of diffuse gastric cancer and/or lobular breast cancer in the family, past and present. These instances of cancer may be resulting from a mutation in the CDH1 gene. Knowing your family medical history is a critical component for preventive health care.

CDH1 gene mutations can be passed down to family members regardless of gender. Inheritance does not skip generations. If you have a CDH1 mutation, it is most likely that you have inherited it from one of your parents. Your siblings have a 50% chance of having the mutation. Your children have a 50% chance of inheriting the mutation.

why get genetic testing?

Knowing your CDH1 status informs of increased risk for HDGC. You can work proactively with your health care team to begin surveillance while considering preventive actions to eliminate cancer risk. If you already have cancer, knowing your CDH1 status will help as you work with your health care team to plan the best course of action for your treatment.

Genetic testing helps to inform other family members of their own cancer risk. Positive or negative, results for a gene mutation can provide you with critical information to help you be proactive and make informed decisions about your health care, as well as providing a sense of relief from uncertainty.

RESEARCH

Researchers and patient advocates throughout the world come together to share research findings, update international clinical guidelines for care of Hereditary Diffuse Gastric Cancer patients and families, and identify needs for future research. HDGC may be rare, but a lot of people care.