January 2026 | LMNA Cardiac Newsletter

We are excited to announce that the next LMNA Cardiac In-Person Patient Meeting will take place in San Francisco, California, in May 2026.

Following the success of our U.S. meeting in Raleigh, this event will once again bring together patients, families, clinicians, researchers, and advocates for a meaningful in-person gathering.

More details on dates, venue, and registration will be shared soon.

👉 Learn more and stay updated:
https://www.lmnacardiac.org/lmna-cardiac-in-person-patient-meeting-san-francisco-california/ 

Our global LMNA community is growing stronger every day. With close to 1,000 patients in 67 countries, we are proud to introduce our first official country representatives—helping to provide support in local languages, connect patients regionally, and build stronger communities worldwide.

This is an important step in making sure no one faces LMNA-related cardiomyopathy alone. We will soon be expanding to Germany, France, and South America, and we are grateful for the many active support groups already making a difference locally.

👉 Read the full update and meet our country representatives:
https://www.lmnacardiac.org/the-global-lmna-cardiac-network-continues-to-grow-meet-our-country-representatives/

Interested in becoming a country representative?
We would love to hear from you. Please contact us at info@lmnacardiac.org — we’re happy to help you get started.

As the Global LMNA Cardiac Network continues to grow, so does our ambition to support more patients, families, and research initiatives worldwide. To help us take the next steps, we are looking for a Fundraising Lead to join our community.

Do you:

• Have a personal connection to LMNA (patient, family member, caregiver)?

• Have experience with fundraising, partnerships, sponsorships, or donor engagement?

• Have some time available to help (no huge time commitment is required)?

• Want to make a real and lasting impact in the LMNA cardiac community?

If so, we would love to hear from you.

Please reach out to info@lmnacardiac.org — we’d be very happy to connect and explore how we can work together to grow support for the global LMNA community.

Together, we can do more. 💙

We are pleased to invite you to our next LMNA Cardiac Virtual Patient Meeting on January 25, 2026

📍 Online – open to patients, families, and caregivers worldwide

Our virtual patient meetings offer a safe and supportive space to:

• Connect with others affected by LMNA-related cardiomyopathy

• Share experiences, challenges, and questions

• Learn from and support each other across borders

👉 Please register here: https://www.lmnacardiac.org/patient-meetings/

You can find all 2026 meeting dates and more details here:
https://www.lmnacardiac.org/new-virtual-patient-meeting-dates-announced-for-2026/

We look forward to seeing you there and continuing to build our global community together. 💙

We are proud to announce that LMNAcardiac.org is an official Charity Partner of the Walk of the World – the 4 Days Marches (Vierdaagse) in Nijmegen. This iconic event brings together over 45,000 walkers from around the globe and offers a powerful platform to raise awareness and funds for LMNA-related heart disease.

In 2026, the LMNA Cardiac team will once again walk to support research and accelerate progress for our community. Every step counts.

👉 Learn more: https://www.lmnacardiac.org/lmnacardiac-becomes-official-charity-partner-of-the-walk-of-the-world-4-days-marches/

We’re excited to share the latest developments from the LMNA-331 research initiative, including new progress and early insights from ongoing studies. This work continues to focus on understanding disease mechanisms and accelerating the path toward meaningful treatments.

🔬 In this update, we highlight recent milestones and outline how patients and families can support the research — from data sharing to participation opportunities.

Your engagement is vital in driving LMNA research forward.