Thrive with your FLNC 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 FLNC 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 FLNC 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 FLNC email list. New FLNC 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 FLNC Cardiomyopathy Facebook community to ask questions, share experiences, and hear from others on the same path.
Learn Through Video: Watch our expert video on FLNC 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 FLNC Gene
The Heart’s “Shock Absorber”
The FLNC gene creates Filamin C, a protein that protects heart muscle cells during the constant stretching and squeezing of each heartbeat. It acts as a vital internal support system, helping the heart stay strong and stable.
What happens when FLNC is not working properly?
When the FLNC protein is not working as it should, heart muscle cells can become more vulnerable to damage over time. This may lead to weakening of the heart muscle, scarring (fibrosis), abnormal heart rhythms (arrhythmias), or enlargement of the heart.
Some people with FLNC variants may develop dilated cardiomyopathy (DCM), arrhythmogenic cardiomyopathy (ACM), or features of both conditions. Certain alterations in the gene can also lead to restrictive or hypertrophic cardiomyopathy. In some cases, arrhythmias may occur before major structural changes are seen in the heart.
What this means for your care
In some cases of FLNC-related cardiomyopathy, rhythm problems can occur before the heart muscle shows any structural changes. Because of this, regular monitoring and specialized care, including the potential for a protective ICD, are essential.
Because FLNC 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 FLNC 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 FLNC Cardiomyopathy Patients
You are part of a supportive community.
“Finding the FLNC 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 FLNC Cardiomyopathy Facebook community to ask questions, share experiences, and hear from others walking a similar path.
Watch & Learn about FLNC Cardiomyopathy
Real patients, real doctors, real stories. Watch when you’re ready.
Learn About FLNC Cardiomyopathy with Dr. Lakdawala | 5 min.
FLNC 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 FLNC Cardiomyopathy
What is the FLNC gene?
The FLNC gene provides instructions for making filamin C, a protein that helps support muscle cells, including those in the heart. Certain disease-causing FLNC variants can affect the heart muscle or its rhythm. The implications depend on the specific variant found, so review your result with a genetic counselor or cardiomyopathy specialist.
What types of cardiomyopathy are linked to FLNC?
Some disease-causing FLNC variants are linked to dilated cardiomyopathy (DCM), in which the heart becomes enlarged and weakened, and to arrhythmogenic cardiomyopathy, which can involve abnormal heart rhythms. Other FLNC variants have been associated with different heart muscle conditions. Your diagnosis depends on your heart findings as well as your genetic result.
Why does my care team ask about heart rhythm symptoms?
Some FLNC-related cardiomyopathies can cause abnormal heart rhythms, sometimes before substantial weakening of the heart is apparent. Tell your care team about palpitations, dizziness, fainting, or a change in your ability to exercise. Unexplained fainting needs prompt medical evaluation. Your specialist can explain how your particular variant and heart tests affect your monitoring plan.
Can an FLNC variant affect muscles outside the heart?
Yes, some FLNC variants are associated with muscle conditions that can cause weakness or other movement-related symptoms. Many people with FLNC-related cardiomyopathy do not have skeletal muscle symptoms. Tell your care team about new muscle weakness so they can decide whether a neuromuscular evaluation would be useful.
Should my family members have genetic testing?
If your FLNC result shows a pathogenic or likely pathogenic variant, a genetic counselor can help identify relatives who may benefit from targeted testing and heart screening. FLNC-related cardiomyopathy often follows an autosomal dominant inheritance pattern: each child of someone with a disease-causing FLNC variant has a 50% chance of inheriting it. Inheriting the same genetic variant as a family member does not mean you will have the same symptoms or experience the condition in the same way.
What follow-up care might I need?
Your specialist may recommend an electrocardiogram (ECG), heart rhythm monitoring, an echocardiogram, or a cardiac MRI. These tests help assess both heart function and rhythm. The type of FLNC variant, your symptoms, family history, and test results will guide how often you need follow-up and whether treatment is appropriate.
Where can I connect with others affected by FLNC cardiomyopathy?
GCAC’s FLNC support group offers a place for patients and families to share experiences and find support. Sign up via the form below.
Join the FLNC community
Be the first to know about new research, clinical trials, and helpful resources for people and families affected by FLNC variants.Strictly Private: Your data is never shared with third parties without your permission.
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Your Choice: Opt-in or out of communications at any time.
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.