March 2026 | LMNA Cardiac Newsletter

We’re pleased to share Episode 3 of the LMNA Patient Interview Series, continuing our effort to highlight real-life experiences within our community.

In this series, members of the LMNA community share their personal journeys living with LMNA-related disease — offering insight into the challenges, resilience, and day-to-day realities behind LMNA cardiomyopathy and laminopathies.

These conversations help us learn from one another, feel less alone, and better understand the impact of LMNA conditions beyond the clinical perspective.

👉 Watch Episode 3:
https://www.lmnacardiac.org/new-in-the-lmna-patient-interview-series-episode-3/

We’re excited to share another important step in strengthening our global LMNA community: our country-specific groups are now active and growing.

These groups make it easier for LMNA patients and gene mutation carriers to connect with others in their own region and language — creating space to share experiences, offer support, and exchange practical information closer to home.

🌐 Currently active groups include: Germany, Sweden, France, the United Kingdom, Australia, China, and Latin America.

These local communities help foster connection, understanding, and support — because no one should have to navigate LMNA-related cardiomyopathy alone.

👉 Learn more and explore the groups:
https://www.lmnacardiac.org/the-global-lmna-cardiac-network-continues-to-grow-meet-our-country-representatives/

Interested in joining a group — or helping start one in your region? We’d love to hear from you: info@lmnacardiac.org

We’re pleased to announce that registration is now open for our upcoming LMNA Cardiac In-Person Patient Meeting, taking place at Stanford University in California.

This special gathering offers a unique opportunity to connect face-to-face with others in the LMNA community — including patients, families, researchers, and clinicians. Together, we’ll share experiences, learn from one another, and discuss the latest insights in LMNA cardiac care and research.

You are welcome to join us for one or both days of the event.

Whether you are newly diagnosed or have been part of the community for years, this meeting is designed to be informative, supportive, and meaningful.

👉 Learn more and register:
https://www.lmnacardiac.org/lmna-cardiac-in-person-patient-meeting-stanford-california/

We’re excited to share an important new development through our partnership with Citizen Health. The AI Advocate mobile app is now available — designed to support patients and families in managing their care more effectively.

One of its most powerful features allows you to record your medical appointments, helping you stay fully present during conversations with your care team. The app then transforms these discussions into clear summaries with actionable next steps, making it easier to understand and manage your care.

In addition, the app brings together your medical records, AI-powered care support, and key health information — all in one place, accessible from your phone.

👉 Download the app

Currently available for U.S.-based iPhone users. Android and international access are expected soon.

We’re pleased to share that a Dutch LMNA Patient & Gene Carrier Day will take place on April 18, 2026.

This dedicated in-person event brings together patients, gene mutation carriers, families, and experts from across the Netherlands to connect, share experiences, and learn more about LMNA-related conditions in a local setting.

It’s a valuable opportunity to meet others in the Dutch LMNA community, exchange experiences, and gain insights from experts and ongoing developments.

👉 Learn more:
https://www.lmnacardiac.org/dutch-lmna-patient-gene-carrier-day/

👉 Download the flyer:
https://www.lmnacardiac.org/wp-content/uploads/2026/03/LMNA-patienten-en-gen-dragersdag-18-April-2026.pdf

Whether you are a patient, gene carrier, or family member, you are warmly invited to join this important day of connection and learning.