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Gene-specific organizations
If you or a family member have received a positive genetic test result, there may be an advocacy organization dedicated to people with similar results. Gene-specific advocacy organizations are dedicated to supporting families affected by variants in a specific gene.
These organizations may offer resources such as educational materials and research updates tailored to the genetic variant. Some also host family calls or meetings.
There are hundreds of these organizations doing important work, so it is challenging for GeneDx to maintain a comprehensive list. Going directly to their websites ensures you access the most up-to-date information from each organization.
The most efficient way to find the organization(s) dedicated to your specific result is to conduct a web search for the name of the gene where your genetic variant was found (or the specific condition you’ve been diagnosed with), along with keywords like “advocacy,” “support,” or “organization.”
Not all genes have an associated advocacy organization. In this case, we encourage you to consider reaching out to the more general organizations listed in the other section on this page.
You might also want to explore MyGene2 (www.MyGene2.org). This platform allows you to search for and connect with other families who share the same condition or gene variants, providing an opportunity to exchange information and offer support. You can also choose to make yourself available for contact by researchers.
Disease-specific organizations
Disease-specific organizations focus on a particular disorder or class of genetic conditions. These organizations often provide resources and support to families affected by that specific class of conditions, including educational materials, research updates, or family calls and meetings.*
Advocacy organizations supporting broad communities
The following advocacy organizations provide support to families affected by rare disorders and other conditions. These organizations also support the undiagnosed community and serve as a central hub, offering relevant information on their websites and through webinars, conferences, and other events.