February 2026 | LMNA Cardiac Newsletter

We’re excited to share that the location is now set for our upcoming LMNA Cardiac In-Person Patient Meeting—and we’ll be gathering at Stanford University in California!

Registrations are now open, and we warmly invite you to join us for one or both days of this special event. It will be a great opportunity to meet others from the LMNA community in person, learn, share experiences, and connect with patients, families, and experts.

This promises to be a truly interesting and meaningful in-person meeting, and we’d love to see you there.

👉 Find all details and register here:
https://www.lmnacardiac.org/lmna-cardiac-in-person-patient-meeting-stanford-california

We hope you can join us at Stanford for this important moment for our community.

This Heart Month, we’re launching something big for the LMNA community 💙

The LMNA Cardiac Network has partnered with Citizen Health to give you access to your complete medical history in one secure place—and powerful new tools to help you better understand your journey and prepare for care.

We’re calling this initiative 100 Hearts Strong—with a goal to bring 100 community members onto Citizen Health and build momentum for research that starts with you.

With a 5-minute sign-up, you can:

• See your full medical history in one place (U.S. providers)
• Get instant insights with Citizen Health’s AIAdvocate, built for rare disease communities
• Prepare better for appointments with data-driven insights
• Contribute to research from home, on your terms

👉 Read the full details and get started right away: https://www.citizen.health/ai-advocate/lmna

This Heart Month, resolve to understand your journey—and be one of 100 Hearts Strong.

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

In addition to our virtual patient meetings that take place every second month, these groups make it easier for LMNA patients and gene mutation carriers to connect with others in their own region and in their own language—sharing experiences, support, and practical information closer to home.

🌍 Currently active groups: Germany, Sweden, France, United Kingdom, Australia, Latin America

This is a great way to find local support, build community, and make sure no one has to navigate LMNA-related cardiomyopathy alone.

Interested in joining one of these groups—or helping us start a new one in your region? We’d love to hear from you. Please contact us at info@lmnacardiac.org and we’ll be happy to help you get connected or get started.

Together, we’re building a stronger, more connected LMNA community—worldwide. 💙

We’d like to share an important opportunity to contribute to research that can make a real difference for individuals and families affected by an LMNA variant.

An international survey is now open focusing on Preimplantation Genetic Testing (PGT) for people with an LMNA variant. The goal is to better understand experiences, perspectives, and needs—so healthcare professionals and researchers can improve counseling, care, and support for our community.

If you carry an LMNA variant, your perspective is incredibly valuable. By taking part, you’re helping to shape future research and care for families worldwide.

👉 You can read more and participate here:
https://www.lmnacardiac.org/invitation-to-participate-international-pgt-survey-for-individuals-with-an-lmna-variant/

Thank you for considering taking the time to contribute. Together, we can help ensure the voices of the LMNA community are heard and reflected in future care and research.