Thrive with your MYBPC3 Gene
Whether your result is new or you’ve lived with it for years, connect with others who share your gene and stay close to the latest research and clinical trials that could help you live a healthier life.
Join the MYBPC3 communityHave a different gene? Search here.
“When my result came back, I felt completely alone. Finding people who truly understood changed everything.”
Maria, 47
Living with the MYH7 cardiomyopathy gene
“My diagnosis explained my family history, and let me take action to protect my kids.”
Christy Johnson
Living with a DSP cardiomyopathy gene
“The community answered questions I didn’t even know how to ask. I finally feel in control.”
James, 34
Caregiver to father with TTN cardiomyopathy gene
Your MYBPC3 quick-start guide
You don’t need to figure everything out today. Here’s what matters now, and what can wait a few weeks.
What you can do today
Join the MYBPC3 email list. New MYBPC3 trials and findings are emerging quickly. Fill out the form below to receive updates about future research and clinical trial opportunities.
Connect With Others: You don’t have to process this alone. Join the MYBPC3 Cardiomyopathy Facebook community to ask questions, share experiences, and hear from others on the same path.
Learn Through Video: Watch our expert video on MYBPC3 and check out our recorded webinars with real patients, real doctors, and plain language.
Talk With Someone Who’s Been There: Not sure where to start? Email us with your questions at info@geneticcardiomyopathy.org
Learn More:
Explore these trusted organizations for additional information and support:
- DCM Foundation: Learn more about dilated cardiomyopathy, inherited heart disease, patient education, and support resources.
- Foundation for Inherited Arrhythmias: Learn more about heart rhythm disorders, inherited arrhythmias, family screening, and patient support.
- HeartCharged: Learn more about inherited heart conditions through patient stories, education, advocacy, and support.
Building your care plan
Find a Specialist. Not all cardiologists specialize in cardiomyopathy or inherited heart conditions. In the coming weeks, connecting with a Cardiomyopathy Specialist can make a meaningful difference in how your care is guided.
Establish a Baseline. Your care team may recommend heart testing, such as an echocardiogram or EKG, to understand your current heart function and create a reference point for the future.
Consider Genetic Counseling. A genetic counselor can help you better understand your genetic testing result, what it means for your health, and how to approach conversations with family members who may want to be tested.
Support Your Heart Health. Your care team will work with you to focus on protective measures like blood pressure management. Small, consistent steps will give your heart the best opportunity to stay strong.
Take these resources with you:
Download and print the Doctor Discussion Guide to help you feel organized and confident as you navigate your diagnosis.
Understanding the MYBPC3 Gene
The “Power Regulator” of the Heart
The MYBPC3 gene provides instructions for making cardiac myosin-binding protein C, a protein that helps regulate how heart muscle cells contract and relax with each heartbeat. It plays an important role in helping the heart beat in a coordinated and efficient way.
What happens when MYBPC3 is not working properly?
When the MYBPC3 protein is not working as it should, the heart muscle may have trouble contracting normally. Over time, this can cause the heart muscle to become thickened, stiff, weakened, or less efficient at pumping blood.
Many people with MYBPC3 variants develop hypertrophic cardiomyopathy (HCM), while some individuals may develop dilated cardiomyopathy (DCM) or features of both conditions. Some people may also experience arrhythmias (abnormal heart rhythms), fatigue, shortness of breath, chest discomfort, or exercise intolerance.
What this means for your care
Because MYBPC3 variants can develop gradually, regular monitoring is essential. Your care team will use these checkups to also assess your risk for arrhythmias and determine if a protective ICD is appropriate for you.
Because MYBPC3 cardiomyopathy is genetic, your family members may also benefit from testing. Parents, siblings, and children each have a 50% chance of carrying the same variant. Click here for practical tips on talking with your family members about your genetic results.
You did not cause this. Genetic variations are a natural part of human biology. Knowing this information now gives you and your care team a powerful tool to protect your heart health and guide your long‑term care.
Why Specialized Care Matters
Because MYBPC3 variants are unique, your care should be too. While a general cardiologist is a great starting point, managing genetic cardiomyopathy usually requires a cardiomyopathy genetics specialist.
To find a cardiomyopathy specialist, please click here.
“In a community matched to your exact diagnosis, families get support that helps them thrive.”
Sharisse Jiminez
Genetic Counselor
“Connecting with families who share your diagnosis can provide support, understanding, and sense of community.”
Sharisse Jimenez-Cyrus
Genetic Counselor
Watch a 2-minute message from our Executive Director, Greg Ruf
Connection & Support for MYBPC3 Cardiomyopathy Patients
You are part of a supportive community.
“Finding the MYBPC3 result felt like finally getting the owner’s manual for my heart.”
If you would like to connect with others, you can join our private MYBPC3 Cardiomyopathy Facebook community to ask questions, share experiences, and hear from others walking a similar path.
Watch & Learn about MYBPC3 Cardiomyopathy
Real patients, real doctors, real stories. Watch when you’re ready.
Learn About MYBPC3 with HeartCharged | 1 min.
Gene Therapy Breakthroughs for Cardiomyopathies: Insights into Tenaya’s Clinical Trials | 60 min.
Dr. Luisa Mestroni’s Sarcomeric Genes Expert Video | 15 min.
MYBPC3 Clinical Trials & Research
Progress in this field is steady and continually evolving. We currently know of more than 30 companies that are working on potential new cardiomyopathy therapies (mostly gene-specific), but many have not reached the clinical trial phase yet. We encourage you to visit our clinical trials and research page to view available opportunities that might be right for you.
Be sure to fill out the form below so that we can contact you when we know of any relevant trials or research opportunities. Staying connected means you remain part of the progress, even before specific clinical trials or research studies exist.
DES Webinars
BAG3 DCM Gene Therapy Clinical Trial Studies Webinar – 4.15.2026 | 61 min.
Affinia BAG3 DCM – UPBEAT Clinical Trial Webinar- 6.10.2026 | 1 hr 6 min.
Frequently asked questions about MYBPC3 Cardiomyopathy
What is the MYBPC3 gene?
The MYBPC3 gene helps make cardiac myosin-binding protein C, which helps regulate how the heart muscle contracts and relaxes. Disease-causing MYBPC3 variants are a common genetic cause of hypertrophic cardiomyopathy (HCM). A genetic counselor can help explain what your specific test result means.
Does a MYBPC3 variant mean I have cardiomyopathy?
Not necessarily. A person can have a disease-causing MYBPC3 variant without currently having detectable heart changes or symptoms. Whether you have cardiomyopathy depends on a heart evaluation, and findings may change over time. A variant of uncertain significance (VUS) should not be treated as a confirmed disease-causing result.
How can MYBPC3 affect the heart?
MYBPC3-related cardiomyopathy most often appears as HCM, in which the heart muscle becomes thickened. Some people may develop abnormal heart rhythms or reduced heart function. The age when changes appear and their severity can vary, even among relatives with the same variant.
What symptoms should I tell my care team about?
Tell your care team about shortness of breath, chest discomfort, palpitations, dizziness, fainting, or a change in how much activity you can manage. Some people have few symptoms despite heart changes, so recommended checkups matter even when you feel well. Unexplained fainting needs prompt medical evaluation.
Should my family members have genetic testing?
If your MYBPC3 result is a pathogenic or likely pathogenic variant, a genetic counselor can help identify relatives who may benefit from targeted testing and heart screening. MYBPC3-related HCM usually follows an autosomal dominant inheritance pattern: each child of someone with a disease-causing variant has a 50% chance of inheriting it. Inheriting the variant does not predict whether or when heart changes will develop.
What follow-up care might I need?
Your care team may recommend an electrocardiogram (ECG), an echocardiogram, or heart rhythm monitoring. These tests help detect changes and guide decisions about treatment. Your specialist will tailor the follow-up plan to your heart findings, symptoms, family history, and genetic result.
Where can I connect with others affected by MYBPC3 cardiomyopathy?
GCAC’s MYBPC3 support group offers a place for patients and families to share experiences and find support. Sign up via the form below.
Join the MYBPC3 community
Be the first to know about new research, clinical trials, and helpful resources for people and families affected by MYBPC3 variants.
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Have a different gene? Search here.
A Message of Hope
Many biopharma companies and researchers are working on advanced treatments for genetic cardiomyopathies. We anticipate new clinical trials and research opportunities in the near future. You found this community at the right moment. Welcome.