Thrive with your LMNA 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 LMNA 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 LMNA 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 LMNA email list. New LMNA 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 LMNA Cardiomyopathy Facebook community to ask questions, share experiences, and hear from others on the same path.
Learn Through Video: Watch our expert video on LMNA 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 LMNA Gene
The Heart’s “Control Center”
The LMNA gene creates lamin A/C proteins that support and protect the nucleus, which is the “control center” inside your heart muscle cells. These proteins keep heart cells organized and strong enough to handle the constant stress of every heartbeat.
What happens when LMNA is not working properly?
When the LMNA 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), electrical conduction disease, or abnormal heart rhythms (arrhythmias).
Some people with LMNA variants may develop dilated cardiomyopathy (DCM), and rhythm problems or electrical conduction issues can sometimes appear before significant weakening of the heart muscle is detected.
What this means for your care
In many cases of LMNA-related cardiomyopathy, electrical or rhythm issues can appear before any significant weakening of the heart muscle is detected. Because of this, regular monitoring and specialized care, including the potential for a protective ICD, are especially important.
Because LMNA 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 LMNA 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 LMNA Cardiomyopathy Patients
You are part of a supportive community.
“Finding the LMNA 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 LMNA Cardiomyopathy Facebook community to ask questions, share experiences, and hear from others walking a similar path.
Watch & Learn about LMNA Cardiomyopathy
Real patients, real doctors, real stories. Watch when you’re ready.
LMNA Patient Welcome by Shauna Planck | 2 min.
LMNA 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 LMNA Cardiomyopathy
What is the LMNA gene?
The LMNA gene provides instructions for making lamin A and lamin C, proteins that help support the nucleus inside cells. Certain disease-causing LMNA variants can affect heart muscle cells and cause LMNA-related cardiomyopathy. A genetic counselor can help explain what your specific genetic test result means.
How can LMNA cardiomyopathy affect the heart?
LMNA-related cardiomyopathy often involves dilated cardiomyopathy (DCM), in which the heart becomes enlarged or pumps less effectively. It can also disrupt the electrical signals that control the heartbeat. Electrical or rhythm changes may appear years before noticeable weakening of the heart muscle, which makes regular follow-up important.
What symptoms should I tell my care team about?
Tell your care team about a racing or irregular heartbeat, dizziness, fainting, shortness of breath, unusual fatigue, or a change in your ability to exercise. Unexplained fainting needs prompt medical evaluation. Some electrical changes cause few symptoms, so keep your recommended appointments even when you feel well.
Will I need a pacemaker or defibrillator?
Not everyone with an LMNA variant needs a device. A pacemaker can help with certain slow heart rhythms, while an implantable cardioverter-defibrillator (ICD) can treat dangerous rhythms. Your specialist will assess your heart function, rhythm findings, symptoms, and other risk factors to discuss whether either device is appropriate for you.
Can an LMNA variant affect muscles other than the heart?
Some disease-causing LMNA variants are associated with conditions that affect skeletal muscles and can cause weakness or stiffness. Others primarily affect the heart. If you notice muscle symptoms, tell your care team so they can consider whether another evaluation would be helpful.
Should my family members have genetic testing?
If you have a pathogenic or likely pathogenic LMNA variant, a genetic counselor can help identify relatives who may benefit from targeted testing and heart screening. LMNA-related dilated cardiomyopathy is usually inherited in an autosomal dominant pattern: each child of someone with a disease-causing variant has a 50% chance of inheriting it. Inheriting it does not predict exactly when or how heart problems will develop.
What follow-up care might I need?
Your specialist may recommend an electrocardiogram (ECG), heart rhythm monitoring, and heart imaging such as an echocardiogram. These checks look for electrical and heart muscle changes. Your follow-up schedule and treatment plan should reflect your genetic result, family history, symptoms, and heart findings.
Where can I connect with others affected by LMNA cardiomyopathy?
GCAC’s LMNA support group offers a place for patients and families to share experiences and find support. Sign up via the form below.
Join the LMNA community
Be the first to know about new research, clinical trials, and helpful resources for people and families affected by LMNA variants.
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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.