June 2026 | LMNA Cardiac Newsletter

We are excited to announce the launch of a new documentary film project that will share the stories of individuals and families affected by LMNA-related cardiac disease.

The documentary aims to raise awareness of this rare condition, highlight the challenges faced by patients and families, and showcase the importance of research, early diagnosis, and community support. By bringing personal experiences to a wider audience, we hope to inspire greater understanding and accelerate progress toward better treatments and outcomes.

This project is a unique opportunity to give a voice to the LMNA community and help bring this disease out of the shadows.

We look forward to sharing updates as the project develops and invite our community to join us on this journey.

Read more about the documentary project on our website.

We are proud to announce that LMNA Cardiac has been awarded the Wiek van Gilst Collaboration Prize at the DCVA-NLHI Translational Research Meeting.

This award recognizes the importance of collaboration in advancing cardiovascular research and innovation. For our community, it is a meaningful acknowledgment of the partnerships between patients, families, researchers, clinicians, and advocates working together to improve outcomes for people affected by LMNA-related cardiac disease.

The prize highlights the impact that patient-led organizations can have in accelerating research, fostering connections, and ensuring that the patient voice remains at the center of scientific progress.

We are grateful to everyone who has contributed to this journey and look forward to building on this momentum to advance research and support for the LMNA community worldwide.

Read the full announcement on our website.

LMNA Cardiac recently attended the Global Heart Hub Patient Networks Meeting in Amsterdam, bringing together representatives from 52 patient organisations across 27 countries.

The event focused on topics including patient-centred care, health literacy, patient-reported outcomes, and the role of patient organisations in shaping the future of cardiovascular healthcare. It was an excellent opportunity to share experiences, build new collaborations, and strengthen the voice of the cardiovascular disease patient community.

Thank you to Global Heart Hub for hosting this valuable event and bringing together patient advocates from around the world.

Read the full story.

LMNA Cardiac is taking part in the Ticking Clock Challenge (Dutch: Tikkende Klok Challenge), a fundraising initiative to support awareness, research, and patient advocacy.

By participating, donating, or sharing the campaign, you can help accelerate research and improve outcomes for individuals and families affected by LMNA-related cardiac disease.

Every contribution makes a difference as we work together to create a brighter future for the global LMNA community.

Learn more and support the challenge through our campaign page.

Advancing research is at the heart of our mission, and we are proud to be actively contributing to multiple scientific initiatives focused on LMNA-related cardiomyopathy.

Through collaborations with leading researchers, academic institutions, and international research networks, LMNAcardiac.org helps ensure that the patient perspective remains central to the development of new knowledge, diagnostics, and potential therapies. Our effortsinclude supporting patient engagement, facilitating research participation, promoting data sharing, and helping connect scientists with the global LMNA community.

Research progress is only possible through collaboration. We are grateful to the patients, families, clinicians, researchers, and supporters who continue to work together to accelerate discoveries and improve outcomes for people living with LMNA-related cardiac disease.

Together, we are helping move the field forward and bringing hope closer to reality for the entire LMNA community.

Read the full story on our website.

We are pleased to announce an upcoming LMNA Cardiac In-Person Meetup in Frankfurt, Germany, taking place on 24 October 2026.

This meeting will provide a valuable opportunity for patients, families, and members of the LMNA community to meet in person, connect, exchange experiences, and strengthen local support networks.

In-person gatherings continue to play an important role in bringing the community together and creating meaningful personal connections among people affected by LMNA-related cardiac disease.

We warmly encourage interested patients and families to participate and help share this event within the LMNA community.

More information about the Frankfurt LMNA meetup