ConnectMyVariant's mission is to end hereditary disease by bringing families together.
ConnectMyVariant is an educational health-focused 501(c)3 nonprofit organization that supports individuals and families with hereditary disease 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 so that they can get optimal medical care. ConnectMyVariant brings people with the same genetic risk together through our variant database and community engagement events to share experiences and find common ancestors. 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:
- Working with patients to implement personalized family outreach plans
- Interactive educational workshops about sharing information on inherited disease risk
- Variant specific family reunions to share stories and plan outreach to cousins
- Genealogy assistance to help connect individuals in variant groups
- 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. This family outreach, also known as cascade testing, is recommended by multiple guidelines. Despite overwhelming evidence, family outreach assistance is not reimbursed by insurance or integrated into healthcare. Many people suffer and die from hereditary disease that could have been prevented or caught early.
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 awareness and education interventions that target the general population.
Equity and Inclusion:
ConnectMyVariant is committed to being a leader for equity, diversity, and inclusion in hereditary disease prevention. ConnectMyVariant’s goal is to spread awareness among all individuals and families about inherited disease risk. All project staff, participants, and partners in ConnectMyVariant have an equal voice in developing innovative ways to improve hereditary disease outreach and prevention for all people. By fostering a diverse and inclusive community, we can provide knowledge and opportunities that have been historically inaccessible to millions of people.