Mission and Goals

Our mission

To end hereditary disease by bringing families together

ConnectMyVariant is an educational health-focused nonprofit organization that supports individuals and families with hereditary disease, such as cancer risk, in their early detection and prevention efforts. We provide unique value by leveraging our evidenced-based family connection protocols to help people identify other at-risk relatives and help those relatives access genetic testing and tailored preventative medical care. ConnectMyVariant brings people with the same genetic risk together through our variant database and community engagement events to share experiences, find common ancestors, and help each other get the best medical care. ConnectMyVariant also works to increase awareness of the benefits of family outreach among physicians, others who provide prevention care, and the broader genealogy community.
 
Our key activities are

  1. Working with patients to implement personalized family outreach plans
  2. Interactive educational workshops that train patients to talk to relatives about inherited disease risk
  3. Variant specific family reunions to share prevention stories and plan outreach to cousins
  4. Genealogy assistance to help connect individuals in variant groups
  5. Individual equity and inclusion grants for family and community outreach

 

Need and Impact

When hereditary disease risk is known, family outreach has been proven to be the most effective and cost-effective intervention for early detection and prevention. It is recommended by multiple guidelines. Despite overwhelming evidence, family outreach assistance is not reimbursed by insurance or integrated into healthcare. For example, many people suffer and die from hereditary cancer that could have been prevented or caught early. Family outreach for many other hereditary diseases has similar prevention benefits.
 
We have shown that our strategies to encourage family outreach can act as a communication multiplier. Our pilot research at the University of Washington showed that this approach enhanced patient experience, was considered ethical, and was appreciated by newly identified relatives. Our approach is low-cost and is 25 to 50 times more effective than cancer prevention education and outreach interventions that target the general population.