Genetic testing for Danon disease

For boys with symptoms and no clear diagnosis. Genetic testing is available at no cost, and genetic counseling is free.

See if my child qualifies

No cost to check. Your information is private and protected under HIPAA.

200,000+
Patients on the Probably Genetic platform
50+
Patient advocacy partners
90%+
of families pay $0 out of pocket

How it works

1

Complete a symptom assessment

Tell us about your child's symptoms. Your information is securely protected under HIPAA.

2

Free genetic counseling appointment

We'll review your answers and, if appropriate, we'll connect you with a specialist to explore your options.

3

Test kit shipped to your door

A certified lab processes any recommended testing, with 90% of patients paying $0 after insurance.

See if my child qualifies

About this condition

Danon disease is a genetic condition caused by a change in the LAMP2 gene, and it most often affects boys. A genetic test can help confirm whether Danon disease — or a condition with similar symptoms — is behind what your child is experiencing.

Common signs can include

Heart problems (cardiomyopathy) • Muscle weakness • Fatigue or low stamina • Learning difficulties • Vision problems

What families tell us

★★★★★

We used Probably Genetic about a year and a half ago and were able to get our doctors to finally listen to us and send us to genetics close to Boston to a CLIA certified lab. We never got a bill for any of it. Thank you to Probably Genetic for quite literally saving my sons 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

Common questions

How much does this cost? If eligible, genetic counseling is free. If you choose testing, it is billed to your insurance and more than 90% of families pay $0 out of pocket.

Who is this for? This is for children with symptoms and no clear genetic diagnosis, and their parents. Including a biological parent's sample in testing can lead to more comprehensive, clearer results.

How is the sample collected? It's a simple at-home cheek swab. The kit is mailed to your door, with no blood draw and no clinic visit required.

Learn quickly if insurance-billed genetic testing may be an option

Connect with a board-certified genetic counselor from home, in days not months. Probably Genetic covers your appointment cost entirely.

See if my child qualifies
Check if my child is eligible →