Why Connect with Others Who Have Your Variant?
When someone else has the same very rare genetic variant as you, you may share a lot more. You may have already talked to your sisters, brothers, parents, and children about your variant. If not that is a good place to start. You can talk to them and encourage them to get tested for your variant.
Many distant relatives may also have your variant. They may or may not know about it. You may have had similar experiences with health and disease, the same experiences with doctors, and you may be thinking about the same life planning decisions. Finding out who your common ancestors are may help find others who also have your genetic variant. Reaching out to them may save their lives by helping them prevent the diseases you have seen in your family. It can also expand your family tree by a lot.
How to find others who have the same variant?
One way to find others with the same variant is to look on the ConnectMyVariant variant forum index. There may already be others who have your variant on the index. If not, you can use one of several public forums and create a new variant variant forum index.
Another way to find people with the same variant is to ask the ConnectMyVariant team. We have contacts with researchers and clinical laboratories across the country. You could also enroll in PROMPT database, if you want to be contacted by researchers interested in your variant.
How to link your family trees
Once you connect with others who have the same variant, explore and share the information you have about your family tree. Look for common surnames or common geographic locations, these are hints that there may be a connection. As you search you may find and connect with distant relatives that you did not know before.
If you think they may be at risk of having your variant, you can ask those relatives to get clinical genetic testing. This simple act could save their life.
Asking relatives to get specific genetic testing may help them prevent disease, and it may also help you know which branch of your family tree might have connections. Sometimes people find common ancestors just by talking with each other. Others people may never find connections. Statistically, most people with the same variant will find common ancestors within the last 250 years. Having more people that have the same variant increases the chances that all of them will find a common ancestor, because once one distant ancestor is identified others can try to connect with that same ancestor.
Occasionally it turns out that people are not related because the variant happened as a new mutation more than once. You can figure this out. Analysis of the variant data files can show if the specific variant is shared on the same strand of DNA.