CMT Genie

Getting a genetic confirmation of CMT can feel overwhelming, especially if you do not have access to a provider familiar with all the options. The CMT Genie is HNF’s guide to genetic testing: it helps you and your health care provider find the right path, and connects you with telehealth genetic counselors who walk you through your diagnostic journey. Launched in August 2022, with genetic counseling through HNF’s partner InformedDNA, the goal is simple: turn an uncertain diagnosis into a confirmed subtype.

Insurance or self-payBilled to insurance, or discounted self-pay rates.

Telehealth counselingGenetic counselors you meet from home.

Confirms your subtypeThe only way to know your exact gene.

Opens doorsA confirmed diagnosis unlocks research and trials.

Why genetic confirmation matters

Many people are first diagnosed clinically or by EMG. Only a genetic test confirms CMT and identifies the specific subtype, and that confirmation changes what you can do next.

Rule out look-alikes Similar conditions can be identified and excluded, so you and your clinician know what you are treating.

Enable early intervention A confirmed diagnosis supports timely PT, bracing, and other care that protects function.

Avoid neurotoxins Knowing you have CMT helps you and your doctors avoid medications and supplements that can worsen neuropathy.

Predict your course Clinicians can better anticipate prognosis and progression once the subtype is known.

Inform family planning Understanding your inheritance pattern supports decisions about family.

Unlock trials Most clinical trials and research programs require a confirmed genetic diagnosis to enroll.

How the CMT Genie works

1 Complete the HNF referral form Start with a short HNF referral form with your contact information. This connects you with a genetic counselor who specializes in Charcot-Marie-Tooth disease and hereditary neuropathies.
2 Complete your InformedDNA form You will get an email with a link to InformedDNA’s "About You" form. It gathers your symptoms, any neuropathy in your family, and your family history, so your counselor can assess your risk and recommend the right testing.
3 Review your payment options If InformedDNA is in-network, the visit is billed as a specialist appointment (usual copays may apply). Out of network, discounted self-pay rates are available: $175 for counseling and $75 for the results visit. The results visit is optional.
4 Schedule your appointment Once both forms are in, the InformedDNA scheduling team contacts you within two business days to book your telehealth visit. Keep an eye on your email and phone.
5 Get your kit and your results If you choose to proceed with testing, a saliva kit is sent to your home. Complete it and return it as directed. Results are emailed to you, on average within 4 to 6 weeks. If you would like a post-result call with your genetic counselor to talk through any questions, you will have the option to schedule one.

Start CMT Genie

Begin with a short, confidential intake below. A genetic counselor reviews your information and helps you understand your testing options. Completing the HNF referral form is free; genetic counseling is then billed to insurance or offered at discounted self-pay rates.

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A partnership in genetic counseling

Telehealth genetic counseling is offered through HNF’s partnership with InformedDNA. According to InformedDNA, it was the first to provide genetic counseling by telehealth, which is what makes counselors accessible to people who live far from a CMT-experienced clinic.

Eligibility & privacy

The program is for people with signs or a clinical diagnosis of CMT, or a family history of it, who do not yet have genetic confirmation. The Genie starts by asking about your situation so your counselor can recommend the testing path that fits you.

Your privacy is protected throughout. Genetic counseling is confidential, and results are handled under standard medical-privacy protections. Choosing to share de-identified data with research, for example through GRIN, is always a separate, voluntary step.

Frequently asked questions

What is CMT Genie?

CMT Genie is HNF’s guide to genetic testing for Charcot-Marie-Tooth disease. It connects you with telehealth genetic counseling through HNF’s partner InformedDNA and walks you from an uncertain diagnosis to a confirmed subtype.

How much does it cost?

It depends on your insurance. If InformedDNA is in-network with your plan, the genetic counseling visit is billed as a specialist appointment, so your usual copay, deductible, or coinsurance may apply. If it is out of network, discounted self-pay rates are available: $175 for the initial counseling appointment and $75 for the results appointment. If genetic testing is recommended, it may be billed through insurance or purchased directly from the lab at a self-pay rate of $500.

How does the process work?

You complete a short HNF referral form and health questionnaire, then an InformedDNA "About You" form that arrives by email. Once both are in, InformedDNA’s scheduling team contacts you within two business days to book a telehealth genetic counseling visit.

Why does confirming my subtype matter?

A confirmed subtype can rule out look-alike conditions, support early intervention, flag medications that can worsen neuropathy, help your clinician anticipate your course, inform family planning, and unlock clinical trials, most of which require a confirmed genetic diagnosis to enroll.

Is my genetic information private?

Yes. Genetic counseling is confidential, and results are handled under standard medical-privacy protections. Choosing to share de-identified data with research, for example through GRIN, is always a separate, voluntary step.

Do I need to leave home?

Usually not. Counseling is offered by telehealth, and testing is typically a simple blood or saliva sample, which makes the program accessible even if you live far from a CMT-experienced clinic.

Get tested

Confirming your subtype is the single most useful step in your CMT journey. Start the CMT Genie to find your testing path and connect with a genetic counselor.

Start CMT Genie genetic testing Explore CMT types & subtypes

Already confirmed your subtype? Add your story to GRIN → Your participation helps power the research behind future treatments.