May 2026 | LMNA Cardiac Newsletter

We are pleased to share an exciting update regarding the upcoming Stanford University LMNA Cardiac Patient Meeting on May 13–14. Nuevocor has now been added as a speaker to the program, bringing additional insight and expertise to this important community event.

The full meeting agenda is now available and includes a strong lineup of speakers, discussions, and opportunities for patients, families, caregivers, researchers, and healthcare professionals to connect and learn together.

This promises to be a valuable and informative gathering for the global LMNA cardiac community, and we warmly encourage anyone interested to attend if possible. Registration is still open, so it is still possible to join. Please feel welcome to register and take part.

👉 More information and updated agenda:
https://www.lmnacardiac.org/nuevocor-added-as-speaker-at-stanford-lmna-meeting-and-agenda-now-available-13-14-may/

We are delighted to share that the first Dutch LMNA Patient Day was a great success and brought together members of the LMNA community for an inspiring and meaningful day of connection, learning, and support. With 169 participants, it was great to see so many people come together.

Patients, families, and participants had the opportunity to meet in person, share experiences, exchange knowledge, and strengthen local community ties. Events like this show how valuable patient gatherings can be in creating support networks and bringing people together.

We are very grateful to everyone who helped organize and participate in this special event, and we hope it will inspire future LMNA patient meetings in other countries as well.

👉 Read more about the Dutch LMNA Patient Day:

https://www.lmnacardiac.org/first-dutch-lmna-patient-day-was-a-big-success-and-brings-community-together/

We are proud to highlight the growing impact of patient-led sponsor events helping to raise awareness and support for LMNA cardiac research. Across our community, patients, families, and supporters are creating their own fundraising activities and personal campaigns to make a difference.

These initiatives show the strength, dedication, and compassion within the LMNA community. Every event — large or small — helps bring attention to LMNA-related heart disease and supports the search for better treatments and outcomes.

We warmly encourage anyone interested in organizing a personal fundraiser, community activity, sports challenge, or sponsor event to get involved. Together, these efforts can create meaningful progress.

👉 Learn more about patient-led sponsor events and how to participate:
https://www.lmnacardiac.org/patient-led-sponsor-events-support-lmna-cardiac-research/

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

These groups help LMNA patients and gene mutation carriers connect locally — in their own region and language — to share experiences, offer support, and exchange practical information closer to home.

We are proud to now have 10 active country groups: China, Latin America, Germany, France, Italy, Australia, Austria, Canada, Singapore, and Sweden.

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

If you are interested in joining a group — or helping start one in your region — we would love to hear from you: info@lmnacardiac.org

We are happy to share that there will be an LMNA patient meetup/get-together in the Boston area on Saturday, June 13th, from 1:00 PM to 3:15 PM.

This will be a wonderful opportunity to meet in person, connect, and spend time together with others in the LMNA community.

More information about the exact meetup location will be shared soon. Updates will also be posted in the LMNA Cardiac Facebook Group.

If you would like to join, or if you have any questions, please reach out to mary@lmnacardiac.org to register or learn more.

We also warmly encourage you to share this meetup within your network, including family members, friends, and others in the LMNA community who may be interested.