How Do I Get A Genetic Test?

FCS genetic testing is confidential and available at no-cost to certain patients. Talk with your healthcare provider to see if you qualify for the program. Your provider will be the one to order this test. If you qualify, your healthcare provider can order a genetic test at PreventionGenetics.

You qualify if you have:

  • Extremely high (severe) triglyceride levels (more than 750 mg/dL (or 8.4 mmol/L)), on two fasting blood tests in a row.
  • No other known causes of high triglyceride levels.

Take the following steps to be tested:

  • Make an appointment with a healthcare provider to discuss genetic testing.
  • Share the FCSFocus.com/genetic-testing website with your healthcare provider. Your provider will check if you qualify for the no-cost, confidential FCS Genetic Testing program.
  • If you qualify, your healthcare provider can order genetic testing. Genetic testing involves either a saliva sample, an oral swab or a blood draw.
  • All tests can be taken at your doctor’s office, or a saliva kit or an oral swab can be mailed directly to your home.
  • If a saliva kit or an oral swab kit is sent to your home, the kit will arrive a few days after ordering. Follow instructions for sample and how to mail kit to the lab.
  • Testing takes about 3-4 weeks. When results are available, talk with your healthcare provider. You may be scheduled to talk with a genetic counselor about your results and what they mean.
  • To learn more about FCS genetic testing call the GeneMatters hotline at
    +1 888.478.1494.

“Having this conclusive diagnosis meant I didn’t have to self-investigate my own symptoms and my own debilitating chronic condition.” – Charles, Patient with FCS

What Will My Genetic Test Results Look Like?

Genetic testing usually shows one of

three results:

  1. POSITIVE: A positive can occur in two ways:
    • Expected to have FCS. The test found two disease-causing variants in one of the genes that cause FCS. These variants are likely an explanation for some of your health problems.
    • Carrier of FCS. The test found one disease-causing variant in one of the genes that cause FCS.
  2. NEGATIVE: The test did not find a variant in any of the genes known to cause FCS.
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  1. VARIANT OF UNCERTAIN SIGNIFICANCE: One or more variants were found in the genes tested, but the lab does not have enough information to determine if the variant(s) causes FCS or not.

Note: If you are not found to have a disease-causing variant but you have a diagnosis of FCS by your doctor, this result does not change your diagnosis.

Speaking with a genetic counselor will help you understand what your results mean for you and what you should do next. Consider including the test results in your FCS CareBook for future reference and discussion with your HCP.

“Genetic Counselors provide education on a rare disease and help individuals understand what this condition means for them, their future, and their families.” – Kiley Johnson, Genetic Counselor, GeneMatters

NEXT: Working with a Genetic Counselor