September 2026 | LMNA Cardiac Newsletter

We warmly invite patients and families to join our next LMNA Virtual Patient Meeting on September 27, 2026, from 12:00–1:30 PM EST, held online via Google Meet.

Our virtual patient meetings provide a welcoming opportunity to connect with others in the LMNA community, share experiences, ask questions, and support one another. Whether you are newly diagnosed, have been living with an LMNA-related condition for many years, or are supporting a family member, you are very welcome to join.

These meetings are all about bringing our community together and creating a space where patients and families can learn from each other and build meaningful connections — wherever they are in the world.

Learn more and register for the upcoming LMNA Virtual Patient Meeting

We hope to see many of you online!

LMNA Cardiac is currently visiting China to further strengthen connections between LMNA patients, families, experts, and rare disease organizations.

Together with CORD (Chinese Organization for Rare Disorders), we are working to identify and connect more people affected by LMNA-related cardiac disease. Our LMNA China patient group has already grown to well over 70 members, an important step in building a stronger local community.

During the trip, we will meet with CORD, patients, and medical experts in Beijing, followed by further meetings and connections in Shanghai and Guangzhou.

We look forward to sharing more about the trip and continuing to build a strong and connected LMNA community in China.

The LMNA Cardiac In-Person Meetup in Frankfurt, Germany is coming up soon! On 24 October 2026, patients, families, and others connected to the LMNA community will have the opportunity to meet face-to-face, share experiences, and make valuable personal connections.

The meetup is an informal and welcoming opportunity to connect with others who understand what it means to live with LMNA-related cardiac disease, exchange experiences, and strengthen our growing patient community in Germany and beyond.

Whether you have attended an LMNA meeting before or this will be your first time, you are very welcome to join us. We also encourage you to share the event with other patients and families who may be interested.

We hope to see many of you in Frankfurt!

Learn more and register for the LMNA Cardiac Meetup in Frankfurt

We are incredibly proud to share the success of the Ticking Clock Challenge at Circuit Zandvoort, where the Action for LMNA community came together to walk and run in support of LMNA research.

A total of 80 participants across 10 teams took part on behalf of LMNA. Together with family, friends, colleagues, and supporters, they generated 447 donations and raised an amazing €15,027 for LMNA research.

Beyond the fundraising result, the event was a powerful demonstration of community and determination. Patients, families, researchers, healthcare professionals, and supporters came together with one shared goal: to raise awareness and help accelerate research toward earlier diagnosis, better treatments, and ultimately a cure for LMNA-related heart disease.

A heartfelt thank you to everyone who walked, ran, donated, supported, shared, or helped make this special day possible — and to Stichting PLN for organizing the event and welcoming Action for LMNA.

Every step counts. Every donation creates hope. Together, we keep moving LMNA research forward.

Read the full story and see the results of the Ticking Clock Challenge

We are pleased to share that all video presentations from the LMNA Cardiac In-Person Patient Meeting at Stanford University are now available to watch online.

The meeting, held on May 13–14, 2026, brought together patients, families, clinicians, researchers, advocates, and industry representatives for two days of learning, connection, and collaboration. By making the presentations available online, we hope to bring the knowledge and discussions shared at Stanford to the wider global LMNA community.

The presentations cover a broad range of topics, including LMNA cardiomyopathy, genetics and genetic testing, patient registries, emerging treatments, and gene therapy, as well as perspectives from patients, clinicians, researchers, and organizations working in the field.

Whether you attended the meeting or were unable to join us in person, we warmly encourage you to watch and share the presentations with anyone who may benefit.

Watch the Stanford meeting presentations and learn more