FCS is a genetic and rare disease. The diagnosis of it can often be challenging. Healthcare professionals typically look at a person’s medical history, symptoms, physical exam, and laboratory test results in order to make a diagnosis. But it is only through genetic testing to confirm the symptom-based diagnoses.

The FCS foundation has curated a collection of testing resources that offer free and paid options for genetic testing for FCS patients.

1. No Cost FCS Genetic Testing:

FCS TESTING PROGRAM

Program Overview

Akcea Therapeutics, patterned with Prevention Genetics, offers an FCS testing program. This program provides no-cost genetic testing for familial chylomicronemia syndrome (FCS), a genetic condition that is characterized by high plasma triglyceride levels resulting from the improper breakdown of chylomicron lipoproteins by the LPL enzyme. No-cost FCS testing is available for patients with a clinical diagnosis of FCS and is being offered to residents of the US and Canada who meet testing eligibility criteria. The test must be ordered by a qualified healthcare provider.

How to use:

  • Talk to your doctor to determine if you are eligible for a genetic test through PreventionGenetics.
  • Call the GeneMatters hotline at +1 888.478.1494 if you have questions about genetic testing.

 

Program Overview

FCS | SEEK program offers no-cost, confidential genetic testing and counseling to patients with a clinical history of severely elevated triglycerides which may be a sign of underlying hereditary causes like Familial Chylomicronemia Syndrome (FCS) and hyperlipoproteinemia. Arrowhead Pharmaceuticals, Inc. is partnered with Ambry Genetics® to provide sponsored testing which may help to facilitate early diagnosis for at-risk individuals.

How to use:

1. Patients : Share this page to your doctor and ask them to request a test kit for you through the website below..
2. Healthcare professionals: Please click the button below to start.

2. Paid Options:

 

Phosphorus is a team of scientists using genomics to improve human health. They offer best-in-class genetic tests that have helped thousands of people avoid disease and live healthier lives.

They offer two options for genetic testing:

Physician Option

The lipidology DX test can be ordered by a physician as a diagnostic tool. This can be ordered from the office of the physician they are meeting with at the time

After Phosphorus receives your EOB and payment from your insurance company you will receive a bill for any remaining amount due. If you have billing questions, please contact a billing specialist at 855-746-7423.

This test is blood or saliva.

Patient Option

The second tool is a test that can be requested by the end-user.  This version can be ordered and the ‘health risk’ portion of the test and the FCS- LLD should in this test. Note: please contact the provider before placing your order to make sure FCS- LLD testing is still in the test package.

This is $549 and there is no insurance involved.  It is primarily used as a screening tool for those that may believe there is the possibility and they can take the results to their physicians and start the process of ID, education (on both ends), lifestyle changes, etc.

List of Sponsors and test providers


With gratitude, The FCS Foundation thanks the sponsors below for providing genetic testing resources for our patients!