Levels of Connection Overview

Everyone can do something...

As You Find More People with Your Variant, ConnectMyVariant Can Offer More

Everyone who signs up for ConnectMyVariant can make a difference in disease prevention. If you think that you have told all of your relatives, go to level one.

Potential services fall roughly into four levels, starting with opportunities for a network with only one member. As new people who share the same variant join, the network can move into the next level. Each person can then take more actions in addition to continuing the work they’re already doing from previous levels.

How ConnectMyVariant Helps small

A network of people who share your genetic mutation can provide emotional support and help find others who would benefit from testing. Networks also make it possible for researchers to fill gaps in family trees and even conduct medical studies that could help your relatives make decisions about disease prevention plans.

The larger the network, the easier these jobs are. People in ConnectMyVariant can expect different experiences and services depending on how many others with the same variant they are connected with.

Sometimes, a group moves between levels quickly. Other times, someone may spend years without finding another person with their variant. Wherever your network is on this scale, ConnectMyVariant will support you in your disease prevention goals.

  • ConnectMyVariant can point you to resources to prevent disease and find others with the variant.

  • You can share your stories with relatives and encourage them to get screened for the variant. You can also build your family tree using genealogy tools, including genealogical genetic testing. You may find relatives that you did not know about before.

  • If you think that you have done everything, have you found all your aunts, uncles, and cousins? If some of your relatives said "No" to testing at first, have you tried again after a few months or years? Have you tried posting on social media to find others with your variant who you haven’t met yet.

  • ConnectMyVariant Family Outreach Navigators can help with each of these actions.

  • About 60% of people in ConnectMyVariant are in Level 1.

  • ConnectMyVariant can introduce you to people with your variant and facilitate group meetings. We can provide guidance on finding family history connections. 

  • You can share your stories side by side—storytelling can be more powerful when multiple voices speak. You can build a network through social media groups. You can start looking for a common ancestor (people with the same variant have about a 90% chance of having a common ancestor).

  • ConnectMyVariant Family Outreach Navigators can help with these actions.

  • About 30% of families in ConnectMyVariant are in Level 2.

  • ConnectMyVariant can connect you with genealogy resources. We can provide guidance on how to use DNA ancestry tools.

  • You can work with genealogists to find common ancestors. If a common ancestor is found, which is more likely at this stage, you may find it easier to identify and locate distant cousins. You could discover dozens of additional relatives who may benefit from genetic testing. You can connect with these people and encourage them to get screened. 

  • You can volunteer to be a Variant Champion to organize the group efforts. ConnectMyVariant Family Outreach Navigators also help organize group efforts and help people with their individual family outreach efforts.

  • About 10% of people in ConnectMyVariant are in Level 3.

  • ConnectMyVariant can begin to calculate if the disease risk for your specific variant is different from disease risk for the gene generally. We may be able to help some groups find and contact every adult who has a variant, so they can take preventative action. This would be a major step toward our goal to end all hereditary cancer.

  • You can make more educated choices for your prevention plan if the risk associated with your specific variant is different than for the gene generally.

  • As of now, less than 1% of people in ConnectMyVariant are in Level 4. We expect that many groups will be here in a few years.