Find resources, hear about possible research opportunities, and connect with other families.
The following advocacy organizations provide support to families affected by rare disorders and other conditions. These organizations also support the undiagnosed community. These organizations serve as a central hub, offering relevant information on their websites and through webinars, conferences, and other events.
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.
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 a specific genetic variant (sometimes called a mutation). These organizations may offer resources like 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.
We’re here to help! Contact our Advocacy team (Advocacy@GeneDx.com) or Client Services team (Support@GeneDx.com or 888-729-1206, option 3).
*These resources are of an informational nature only. While GeneDx makes every effort to ensure accuracy, this information is not meant to endorse a particular group, be a complete list, nor serve as medical advice. GeneDx presents this opportunity as a courtesy to clinicians and families who may wish to obtain more details.
