Genetic testing for Oculoectodermal syndrome

For children with symptoms and no clear diagnosis. Testing is billed to insurance, and more than 90% of families pay $0 out of pocket.

How old is your child?

Under 2 2 to 12 13 to 20 21 or older

Your privacy comes first. We are HIPAA compliant, and your data is encrypted.

Oculoectodermal syndrome

Oculoectodermal syndrome can have a genetic cause, and genetic testing may help identify whether one is involved.

Also known as: Also known as: oes, oculo-ectodermal syndrome, Toriello Lacassie Droste syndrome, Toriello-Lacassie-Droste syndrome, oculoectodermal syndrome, somatic

Because the symptoms of many conditions overlap, a single genetic test looks across a broad set of genes at once, so you do not have to test for one condition at a time.

Common questions

Is Oculoectodermal syndrome genetic?
Oculoectodermal syndrome can have a genetic cause. A genetic test can help determine whether a genetic change is present.

How is Oculoectodermal syndrome diagnosed?
A board-certified genetic counselor reviews your child's symptoms and history, and genetic testing can help clarify whether Oculoectodermal syndrome has a genetic cause.

How it works

How you find the cause

✓ Tell us the symptoms. Answer a few questions and check whether testing may be covered.

✓ Free genetic counseling. A board-certified counselor guides you, coordinates testing if appropriate, and bills your insurance.

✓ Simple at-home kit. A non-invasive saliva kit delivered to your home; no blood draw required.

90%+

Pay $0 out of pocket

More than 90% of patients pay $0 out of pocket for testing.

200,000+

Families

Families already on the Probably Genetic platform.

50+

Advocacy partners

Patient advocacy partners supporting families and community.

Testimonials

What families tell us

★★★★★

“We were able to get our doctors to finally listen to us... to a CLIA certified lab. We never got a bill for any of it. Thank you to Probably Genetic for quite literally saving my son’s life.”

Rhiannon

★★★★★

“We've been searching for answers for over a decade and I'd almost given up. I'm so grateful that Probably Genetic has taken it upon themselves to make this kind of potentially life-altering testing accessible to families like mine.”

Rob

FAQ

Frequently asked questions

How do I know if my child's symptoms have a genetic cause?

Many genetic conditions look like ordinary pediatric symptoms at first. If your child has symptoms without a clear explanation, or years of testing with no diagnosis, a genetic cause is worth ruling out. A genetic counselor can review your child's history and tell you whether testing is appropriate.

Is genetic testing really covered by insurance?

Often, yes. When testing is medically appropriate, many commercial and Medicaid plans cover it. Your genetic counselor reviews your coverage before anything is ordered, so there are no surprises. Coverage depends on your specific plan and medical necessity.

What will it cost me?

Checking eligibility and speaking with a genetic counselor are free. If testing is ordered, it is billed to your insurance, and more than 90% of patients pay $0 out of pocket. Your counselor will explain any expected cost before you decide to proceed.

Is my family's information private?

Yes. Your information is protected under HIPAA and is never sold. It is used only to coordinate your care.

My child already had some testing. Can we still qualify?

Possibly. Tell us what was done. Many families who had earlier, more limited testing are still candidates for broader analysis.