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PLEASE NOTE: The genetic testing program is on pause right now while we fix some ordering issues. We expect it to be ready again in early June, so please check back then. You can also contact Genome Medical and ask to be added to their list to hear when the program resumes.
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.
Go to Genome MedicalIf you or a loved one has FSHD, getting a genetic test can be a big step toward finding better treatments. 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 industry sponsors to create an approved genetic testing program. While the sponsored part of the program has ended, testing is still available through Genome Medical. You can pay for it yourself or check if your insurance will cover the cost. Their expert genetic counselors will help you figure out the best way to move forward.
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. We’re here to support you every step of the way. If you’re considering genetic testing, or have questions, reach out to learn more.
