TestFSHD

The FSHD Society knows how important it is for people with facioscapulohumeral muscular dystrophy (FSHD) to get the right care and be ready for new treatments. That’s why we’ve created a genetic testing program to help patients confirm their diagnosis and qualify for upcoming clinical trials. Through our program, you’ll get support from expert genetic counselors at Genome Medical. They will help you understand what the test means for you and guide you through the process, including getting the required medical referral.

Making genetic testing easier for everyone

If you or a loved one has FSHD, getting a genetic test can help with clinical trial participation and accessing a treatment in the future. Many clinical trials require a confirmed genetic diagnosis, but unfortunately, testing isn’t always easy to access. Some doctors don’t know how to order the test, and insurance companies may not always cover it. Without this testing, many people miss out on clinical trials and important medical care.

To break down these barriers, the FSHD Society worked with Genome Medical to create an approved genetic testing program that is easy to navigate. You can pay for the services yourself or check if your insurance will cover the costs. Their expert genetic counselors will help you figure out the best way to move forward.

Why Genetic Testing Matters

Our TestFSHD program includes both genetic counseling and testing. Your test results will become part of your medical record, which can help you get the care and services you need. In some cases, having a genetic diagnosis on your record could affect your ability to get life or long-term disability insurance. That’s why talking to a genetic counselor is so important—they’ll help you decide if testing is right for you.

No one should have to go through this alone and we’re here to support you. If you’re considering genetic testing, or have questions, reach out to learn more.