ONG (Setor Social)

ConnectMyVariant

Seattle, WA | Connectmyvariant.org

Sobre Nós

Our Mission: To end hereditary disease by bringing families together 

  • ConnectMyVariant is an educational health-focused non profit 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 helps to support people with hereditary diseases, including getting 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: 

  • Work with patients to implement personalized family outreach plans.
  • Interactive educational workshops that train patients to talk to relatives about inherited disease risk.
  • Variant specific family reunions to share prevention 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 and 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.
  • CMV has 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.

For More information: https://connectmyvariant.org

How to Help and Get Involved:

Become a Supporter:

ConnectMyVariant’s work is supported by private donations. If you would like to support ConnectMyVariant, you can make tax-deductible contributions through every.org: ConnectMyVariant | Every.org


Get Involved:

  • Sign up for our newsletter: signup@connectmyvariant.org
  • Volunteer: For information about volunteering opportunities contact volunteer@connectmyvariant.org.
  • Collaborate: If you are a researcher interested in collaborating with ConnectMyVariant fill out this intake form.
  • Attend a Workshop: ConnectMyVariant holds regular workshops to discuss topics related to hereditary cancer prevention. Dates and times for additional workshops will be announced in the ConnectMyVariant Newsletter. Contact us if you'd like to find more details about workshops.
  •  Other ideas? For other information reach out at our ConnectMyVariant contact: info@connectmyvariant.org.




Follow us on social media:

 ConnectMyVariant | Facebook

 @connectmyvariant Instagram

https://www.linkedin.com/company/connectmyvariant-org LinkedIn

Our Mission: To end hereditary disease by bringing families together 

  • ConnectMyVariant is an educational health-focused non profit organization that supports individuals and families with hereditary disease, such as cancer risk, in…

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