How to Get Free Genetic Testing for People with Autism, Special Needs & Epilepsy

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by Corey Baysden, Syngap mom

If your child or family member has epilepsy or multiple developmental delays, they may be eligible for free genetic testing. We highly encourage testing, as you can read in this blog.

The SynGAP Research Fund is a non-profit organization dedicated to finding new patients with SYNGAP1-related disorders, raising awareness about the condition, and connecting patients with community and better care. The organization can help families navigate the diagnostic journey and identify companies offering free genetic testing. Here are a few resources for families to consider:

  1. Ambit: offers free genetic counseling and testing to all patients who qualify, with services available in all 50 states. Qualifications include children age 7 and under with at least one seizure; or anyone over 7 with at least one seizure, one developmental delay and on at least one seizure medication. Click here to learn about and take the assessment.
  2. Probably Genetic: has developed a quiz to determine eligibility for a free genetic test based on the results’ “high probability.” The quiz is available to all ages in all US states except for New York. Click here to take the quiz.
  3. Invitae’s Behind the Seizure: offers free genetic testing program to any child in the US or Canada under 8 years old who has had an unprovoked seizure. Australian residents can visit this website to sign up.

Genetic testing can be a complex and challenging process. There are many types of tests, and it can be difficult to determine which one to take. Genetic counselors and providers can assist with directing individuals to the appropriate test, but insurance plans may not always cover the cost of testing for certain conditions. Availability of testing can also be limited, making it hard to find a provider who can perform the test and interpret the results. For these reasons, we highly encourage families who suspect their loved one has a genetic condition to review the resources listed above.