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HD Genetics is a privately led healthcare company offering a best-in-class genetic testing and counseling experience and clinical trial research access to individuals impacted by Huntington’s disease. We were founded in 2022 by B.J. Viau (View), an HD family member, and we’ve since served more than 1,500 individuals across all 50 U.S. states.

Our mission is simple: empower each person throughout their HD journey.

No. HD Genetics is a privately owned LLC and is not affiliated with any medical center, hospital, or pharmaceutical company. This independence is intentional – it allows us to design our entire service around the needs of HD families rather than around insurance systems, geography, or institutional protocols. HD Genetics is privately owned and was created by an HD family member.

HD Genetics was founded by B.J. Viau (View), an HD family member whose mother was diagnosed with Huntington’s disease in 1995. B.J. spent over 15 years working in the pharmaceutical industry – including the launch of the first FDA-approved medicine for Huntington’s chorea. BJ co-founded the Huntington’s Disease Youth Organization (HDYO) in 2012 in collaboration with other young people from around the world. The idea for HD Genetics, which launched in 2022, came from participating, listening and learning about issues from the HD community.

Read more about B.J. and our full team on our About page.

HD Genetics is a fully virtual healthcare service – we don’t have a physical clinic location. Our team works remotely (Atlanta and Charlotte, USA), and all of our services are provided via secure video call from the comfort of your home. We can provide genetic testing services to anyone in the United States, and our Clinical Trial Connection service is open to individuals across the United States and Canada. You can find the HD Genetics team at many of the HD patient advocacy events throughout the year.

We offer two core services, both designed exclusively for the Huntington’s disease community:

1. Genetic Testing & Counseling – At-home HD genetic testing with full genetic counseling, for individuals at-risk for HD. Cost: $750 all-in and financial aid is available.

2. Clinical Trial Connection — No-cost, personalized matching to HD clinical and observational studies, for anyone in an HD family.

Both services are guided by HD-specialized experts, and both prioritize privacy, accessibility, and compassionate care.

Genetic Testing & Counseling is for individuals who want to find out if they carry the HD gene mutation. It includes counseling, an at-home saliva test, lab analysis, and results disclosure – for a flat $750 fee.

Clinical Trial Connection is a no cost service that connects you with HD clinical and observational studies that may be a fit for your situation. You don’t need to have been tested with us to use this service.

The two services are independent – you can use either, both, or neither.

Absolutely. Our Clinical Trial Connection service is open to anyone in an HD family, regardless of where (or whether) you’ve been tested. If you have prior test results, we can use them to help match you with studies more efficiently – but they’re not required.

HD Genetics is constantly listening to the HD community to find new opportunities to create valued services. We are actively working to expand our services to reach more families and provide needed and deserved care.

In addition to our two core services, we offer a Clinical Study Navigator program led by Spencer Diehl, LISW — a licensed clinical social worker who supports individuals who are actively participating in specific HD clinical studies. This service is available on a study-by-study basis.

Our flat fee for HD Genetic Testing & Counseling is $750. This is an all-in cost – there are no hidden fees, no add-ons, and no surprise bills.

If $750 is a barrier, our partnership with Help4HD International provides financial aid. To date, no client who qualifies has been turned away due to inability to pay. Our mission is to make sure finances are never in the way for people to be tested. The Help4HD testing fund is always seeking donations if you or your company are able to help support.

We do not accept insurance as a form of payment, but can help you submit your receipt to your insurance company for reimbursement, if you choose.

For comparison, a 2017 study of 777 HD genetic tests at HD Centers of Excellence in the United States reported an average cost of $1,157.

The $750 genetic testing fee covers:

✓ Pre-test genetic counseling session (no-cost – you only pay if you decide to move forward)
✓ At-home saliva collection kit shipped to your door
✓ Laboratory analysis through our HIPAA-compliant and CLIE certified partner lab
✓ Results disclosure session with full explanation
✓ Written test report and HD resource guide
✓ Lifetime follow-up access to our team — no extra cost, ever

There are no other fees and no recurring charges.

Yes – completely. There are no fees or obligations to have a phone call. It’s our mission to educate the Huntington’s families about opportunities they may qualify for today or into the future. The faster that research studies recruit participants, the faster we will know if the medicines work or not. We want to accelerate recruitment for all Huntington’s disease research studies.

 

We accept debit/credit cards, HSA/FSA cards, check and money orders. We do not bill insurance directly – and that’s intentional. Keeping insurance out of the process protects your privacy by ensuring your results never appear in your insurance records automatically.

If you’d like to submit a receipt to your insurer for possible reimbursement after testing, we can provide guidance.

If you have a unique request for payment, please bring it up with our genetic counselor and we can work out a solution.

Our partnership with Help4HD International provides financial aid for individuals who can’t afford the full cost. Currently, more than 50% of clients pursuing genetic testing through HD Genetics request some level of financial aid — and to date, no one has been turned away due to inability to pay, as long as they qualify.

You can check the box on the intake form and our genetic counselor (Wes Solem), will discuss options with you on your first intake call.  We have a few small qualifications, but there’s no separate application form, no income verification, and no judgment.

We work hard to raise funds for the Help4HD genetic testing fund to make sure finances aren’t a barrier to receive genetic testing. If you or your company can help support the Help4HD fund, please reach out.

Everyone has their own definition of remaining anonymous and we can talk through that with you to help you make the right decision. If you’d like to learn more about this before you fill out an intake form, please reach out to Wes or B.J. via email or join our monthly open office hours call on the first Tuesday of each month at 12:30p EST by clicking doxy.me/hdgentics

If you are concerned about your privacy from insurance companies and your medical record, you can use a pseudonym (a fake name) throughout the entire testing process. During your first phone call session, our team will walk you through what anonymous testing means, the trade-offs to consider, and how to choose the approach that fits your situation.

We never share your results with any insurance company. Your results will not be added to your medical record. If you have existing life insurance or long-term care insurance before testing, those policies will not be affected by your results.

Your genetic counselor will discuss insurance considerations with you during your counseling conversation – including the implications for future insurance decisions.

Not automatically. Whether your results become part of your medical record is entirely your choice. Many clients choose to keep their results separate, while others share them with specific healthcare providers — typically their primary care physician or neurologist — when it’s helpful for their care.

You decide who sees your results and when.

HD Genetics takes the storage and security of your health and contact information very seriously. All technology systems used by HD Genetics and our partner laboratory to collect and store your data are HIPAA-compliant.

You can read our full Notice of Privacy Practices on our Privacy Policy page.

We share your information only with:

→ Our partner laboratory (required to process your DNA sample)
→ A partnering physician, who is on the HD Genetics team, for individuals in states that require a MD to order genetic tests
→ Anyone you explicitly authorize in writing

We never share your name, contact info, or other identifying information without your permission. We don’t sell information. We don’t use it for marketing. We don’t share it with advertisers.

In some cases – and only with your consent – we may share de-identified pooled information with HD researchers to help advance treatment development. No information shared in our research papers would ever give away your identity.

Most clients complete the testing journey from intake form to receiving results in 35 to 45 days. The exact timeline depends on your pace – we never rush the process. You can move faster if you’re ready or take more time between steps if you need it.

Some clients even ask for their results to be held by the lab until they feel emotionally prepared to receive them.

If you have a request to accelerate the process, please note that in your intake form and text our genetic counselor, Wes Solem, after you’ve completed it.

We only look at your test results minutes before your scheduled results appointment. There will never be anything that we do that should make you think that we know your test results, before your appointment.

We use an at-home saliva collection kit shipped to your door. You provide a saliva sample at your convenience, then mail it back using a pre-paid FedEx return label. No needles, no lab visits, no clinic appointments.

The sample is then analyzed by our HIPAA-compliant and CLIA certified partner laboratory (Prevention Genetics) to measure the CAG repeat count in your HD gene.

The saliva sample is no different from providing a blood sample.

Yes. The saliva test has the same diagnostic accuracy as a blood draw for measuring CAG repeats in the HD gene. The science behind both methods is identical – saliva simply offers a more convenient, less invasive way to collect the DNA sample.

The saliva test that we offer, through a partner laboratory, is not a new technology and is used across many HD Centers of Excellence.

You can stop the testing process at any point — even after providing your saliva sample. Some clients ask for their sample to be held by the lab until they feel emotionally ready to receive their results.

Testing is your decision, on your timeline. We will never pressure you to move forward.

Approximately three weeks after your sample arrives at the laboratory, your results are ready. Rather than emailing them to you, we schedule a private virtual session where Wes Solem, our Director of Genetics, walks you through your results in full — explaining what they mean for you and your family.

After the session, you’ll receive a written copy of your test report and an HD resource guide tailored to your situation.

Absolutely — and we encourage it. Having a trusted person with you during counseling and your results disclosure can be a meaningful source of support. Just let us know in advance who will be joining.

Our genetic testing service is available to individuals who are:

✓ At-risk for Huntington’s disease (with a biological family member who has or had HD)
✓ 18 years of age or older
✓ Living in the United States
✓ Interested in pursuing genetic counseling and/or testing

If you’ve already tested elsewhere and want to discuss your results with our team, we can also provide complimentary follow-up sessions.

Genetic testing HD is a deeply personal decision that requires informed consent – which is typically reserved for adults under HD genetic counseling protocols. This standard is in place to protect minors, and/or their parents, from making a life-changing decision before they’re developmentally ready to fully understand and process the result.

If you have a unique circumstance involving a child you suspect may have juvenile HD, please reach out to discuss.

One day in the future, when disease modifying therapies are available, we believe that testing below the age of 18 years old will not only be the norm, but it will be encouraged, so those with the genetic mutation can take a medication to prevent, delay, stop symptoms from ever starting later in their life. We aren’t near that time yet, but one day that is our hope!

Our Clinical Trial Connection service is open to individuals located in the United States and Canada. This service is completely free and available regardless of whether you’ve been tested.

Currently, our Genetic Testing & Counseling service is only available to individuals living in the United States. Our Clinical Trial Connection service supports individuals in the United States and Canada.

We don’t have short-term plans to expand outside North America. If you live elsewhere, we recommend reaching out to your country’s national Huntington’s disease advocacy organization for resources.

Clinical Trial Connection is a free service that helps you understand, evaluate, and get connected to current HD clinical and observational studies. We provide:

✓ Education on the current HD research landscape
✓ Personalized matching based on your situation, location, and interests
✓ Direct introductions to study sites and coordinators
✓ Ongoing updates as new trials open

The service is led by B.J. Viau (View), who has personally participated in multiple HD studies including PREVENT-HD, ENROLL-HD, and HD Clarity.

No. Many HD studies actively enroll a range of participants, depending on the study type. During your free consultation, B.J. will walk you through what’s currently enrolling and which studies may align with your situation.

The HD research landscape includes several categories:

→ Disease-modifying therapy trials
→ Observational and natural history studies
→ Biomarker and early-detection research
→ Studies for pre-symptomatic gene carriers
→ Studies for gene-negative family members
→ Symptom management clinical trials

Specific studies change frequently. During your free consultation, B.J. will walk you through what’s enrolling at the time of your conversation.

We maintain direct relationships with the pharma and biotech sponsors running HD trials, study sites and coordinators across the country, and the Huntington Study Group (HSG) through our official partnership. This gives us real-time visibility into what’s actively enrolling, what’s coming next, and which study sites have openings.

Your main point of contact for genetic testing is Wes Solem, ScM, CGC – our Director of Genetics. Wes is a Certified Genetic Counselor who earned his Master of Science in Genetic Counseling from Johns Hopkins University and has been part of HD Genetics since its inception.

He’s personally guided every single client through our testing process since day one – making him one of the most (if not the most) experienced HD genetic counselor in the world.

You can reach Wes anytime at Wes@HDgenetics.com.

Your main point of contact for Clinical Trial Connection is B.J. Viau (View), our Founder and Director of HD Research Access. B.J. has personally participated in multiple HD observational studies — including PREDICT-HD, PREVENT-HD, ENROLL-HD, and HD Clarity — and brings 15+ years of pharmaceutical industry experience to every conversation.

You can reach B.J. anytime at BJ@hdgenetics.com.

Dr. Jaime Hatcher-Martin and Dr. Liz Ferluga are board-certified movement disorders neurologists who oversee our genetic testing orders in states that require a prescribing physician to initiate testing. They’re not involved in the day-to-day counseling experience, but their oversight ensures we can serve clients in every U.S. state.

Both are passionate advocates for telemedicine and access to care for HD families.

We make it easy to meet our team before committing to anything. You have three options:

→ Monthly Open Office Hours (free, virtual): First Wednesday of every month at 12:30 PM EST via doxy.me/HDgenetics
→ Weekly Instagram Live Q&A: Every Tuesday at 11:00 AM EST via @HD_Genetics
→ Direct contact: Call or text (980) 378-1985 or email gc@hdgenetics.com

No intake forms required for any of these. Just show up and ask whatever you want.

Office Hours is our free monthly virtual session where anyone in the HD community can drop in and ask Wes anything about genetic testing, clinical trials, or our team. There’s no script, no agenda, and no obligation — just an open conversation.

It happens the first Wednesday of every month at 12:30 PM EST. Join by visiting doxy.me/HDgenetics when the session begins. Hosted in partnership with HD Reach.

You can reach us in the way that’s most comfortable for you:

📞 Call or text: (980) 378-1985
☎️ Toll-free: 1-877-HD-GENE-X (1-877-434-3639)
✉️ General email: gc@hdgenetics.com
✉️ Email Wes: Wes@HDgenetics.com
✉️ Email B.J.: BJ@hdgenetics.com
📱 Instagram: @HD_Genetics

We respond personally to every message. No call centers, no automated replies.