top of page
Search

Your Guide to Genetic Counseling With InformedDNA

  • Writer: Cure VCP Disease, Inc.
    Cure VCP Disease, Inc.
  • 4 days ago
  • 3 min read

Genetic counseling can sound intimidating—but it doesn’t have to be. Thanks to InformedDNA and their telehealth providers, the process is now more accessible, flexible, and supportive than ever. If you are considering genetic testing for VCP disease, we encourage you to read through this blog or watch the video, presented via a webinar hosted by Cure VCP Disease and led by InformedDNA.



What Is Genetic Counseling?

Genetic counselors are licensed professionals trained in both medical genetics and counseling. They help individuals and families understand genetic conditions, assess risks, and explore their options—whether or not they choose to pursue genetic testing.

You do not need to commit to testing to speak with a genetic counselor. Many people just want to better understand their family history or discuss what testing could mean for them.


How Does Telehealth Genetic Counseling Work?

Thanks to virtual care, you can now receive genetic counseling from the comfort of your home. Here’s what the process typically looks like:

Click on 'Settings' on the picture to update the caption and Alt Text
Click on 'Settings' on the picture to update the caption and Alt Text

1. Get Started

  • Refer yourself or call the number provided.

  • Many people get an appointment within 10 days.

  • Appointments are scheduled to fit your needs—flexible options available.


Mention Cure VCP Disease and InformedDNA will

connect you with a counselor familiar with VCP disease.


2. The First Appointment

  • Review your personal and family health history.

  • Discuss whether genetic testing might be helpful for you.

  • Talk through your goals, concerns, and the risks involved.

  • There’s no pressure—you can stop at any point.


3. If You Choose to Test

  • A test kit will be sent to your home—no need to travel.

  • You collect your sample and mail it back.


4. Post-Test Appointment

  • Once results are ready (typically within 2 months), you’ll have a follow-up visit.

  • You’ll review the results, what they mean for your health and family, and any next steps.

  • You’ll receive a copy of your report and can choose to share it with any healthcare providers.


Cost and Insurance

Cost can vary, but here’s what to expect:

  • Check if your insurance plan is in-network—a care coordinator can help confirm.

  • You may have a small copay or deductible.

  • If your plan isn’t covered, self-pay options are available.

  • Some labs offer financial assistance based on income.

  • Cure VCP Disease fund is available to provide reimbursements up to $500.


Genetic Testing: Why (or Why Not)?

People consider genetic testing for many reasons, such as:

  • Reducing uncertainty

  • Making informed reproductive decisions

  • Financial or life planning

  • Helping relatives understand their risks

  • Becoming eligible for clinical trials

  • Connecting with support and advocacy groups


But it’s also okay to wait. Reasons some may not be ready include:

  • Emotional stress or anxiety

  • Not having a strong support system

  • Worries about genetic discrimination


Good info to know: The Genetic Information Nondiscrimination Act (GINA) offers strong protections for health insurance and employment, but it does not cover long-term care, life, or disability insurance—or apply to military members or small employers. It’s a good idea to get any needed policies in place before testing.

Understanding Genetic Test Results

Here are the three possible result types when testing for a VCP variant:

  • Positive: A variant linked to VCP disease is found. There's a 50% chance it can be passed to children.

  • Negative: No VCP-related variants were detected. You cannot pass it on.

  • Variant of Uncertain Significance (VUS): A variant is found, but we don't yet know if it causes disease. More information and additional cases are needed.


Emotional & Family Considerations

Genetic testing can impact how people feel about themselves and their future. You might feel relief, anxiety, guilt, or clarity. Counselors are trained to support you through this process, whatever you're feeling.

If you are interested, complete the form below and a representative from InformedDNA

will call you to schedule your appointment.

-or-

Call 888-308-1095 to schedule an appointment

Mention Cure VCP Disease and InformedDNA will work to

connect you with a counselor familiar with VCP disease.



bottom of page