Thrive with your BAG3 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 research and clinical trials that could help you live a healthier life.
Join the BAG3 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 BAG3 quick-start guide
You don’t need to figure everything out today. Here’s what matters now, and what can wait.
What You Can Do Today
Join the BAG3 email list. New BAG3 trials and findings are emerging quickly. Fill out the form below to receive updates about future research and clinical trial opportunities.
Connect With Others. Join the BAG3 Facebook community to ask questions and hear from patients and caregivers who share your gene.
Learn Through Video. Watch our videos below, and subscribe to our YouTube channel..
Talk With Someone Who’s Been There. Not sure where to start? Email us with your questions at info@geneticcardiomyopathy.org.
Building Your Care Plan (30-60 Days)
Find a Specialist. Connect with a Cardiomyopathy Specialist for guided care.
Establish a Baseline. Your care team may recommend an echocardiogram, EKG, and/or other tests.
Consider Genetic Counseling. Understand your result and family testing.
Support Your Heart Health. Care for your heart through diet, exercise, lifestyle, and emotional well-being, including blood-pressure management. Pro tip: Improve just one thing at a time until you’ve made a sustainable shift.
Understanding BAG3
The “maintenance manager” of the heart
The BAG3 gene helps keep heart-muscle cells structurally strong and clears out old or damaged proteins. When BAG3 isn’t working at full strength, heart-muscle cells can weaken or stretch over time, which can lead to dilated cardiomyopathy (DCM).
Because BAG3 is genetic, close relatives (parents, siblings, and children) each have about a 50% chance of carrying the same variant, so they may benefit from testing, too.
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.
“In a community matched to your exact diagnosis, families get support that helps them thrive.”
Sharisse Jiminez
Genetic Counselor
Ready when you are
Join the BAG3 community to get support and stay close to the research and clinical trials that could help.
Watch & learn
Real patients, real doctors, real stories. Watch when you’re ready.
Welcome BAG3 patients
A message from our community manager | 1 min.
Understanding BAG3 Cardiomyopathy
Expert overview | 11 min.
The BAG3 playlist
More videos on YouTube
An important moment in BAG3 research
Multiple clinical trials are underway, shifting care from managing symptoms toward targeting the underlying cause.
Current clinical trials
Several BAG3 trials are recruiting now, each with its own eligibility. We’ll help you understand waht participation could mean for you and your family.
See current BAG3 trials
“Patients who engage with their community tend to have better health outcomes.”
Dr. Victoria Parikh, MD, PhD
Director, Stanford Center for Inherited Cardiovascular Disease
Watch a 2-minute message from our Executive Director, Greg Ruf
Frequently asked questions
My family member or loved one has a BAG3 result. Can I join the community?
Yes. The BAG3 community is for anyone affected, whether you carry the variant yourself or you’re supporting someone who does. You’re welcome either way.
Is there any cost to join, and is my information private?
Joining is completely free. Your information is kept private and is never sold or shared with third parties without your permission.
Will joining help me learn about BAG3 clinical trials?
Yes. When you join, we’ll notify you about research and clinical trials specific to BAG3 as they open, so you and your family can explore options that could help.
What is BAG3 cardiomyopathy?
BAG3 helps keep heart-muscle cells strong and clears out damaged proteins. When it isn’t working fully, the heart muscle can weaken or stretch over time, which can lead to dilated cardiomyopathy.
How can I get genetically tested?
Talk with your cardiologist or a genetic counselor, who can order testing and walk you through the results. We also share information on no-cost testing options and can help point you in the right direction.
Join the BAG3 community
Get support through your journey, and be the first to know about research and clinical trials that could help you and your family.
Have a different gene? Search here.