LMNA Cardiac News
LMNA Partners with Citizen Health: New Year, New Understanding for Our Community
February 9, 2026
This February, as we mark American Heart Month and begin a new year, the LMNA Cardiac Network is launching a transformative partnership that puts the power of your medical data back in your hands—with access to personalized tools and the ability to easily contribute to the next generation of LMNA…LMNAcardiac Becomes Official Charity Partner of the Walk of the World (4 Days Marches)
January 15, 2026
We are incredibly proud to announce that LMNAcardiac has become an official Charity Partner of the Walk of the World (4Daagse) – the largest walking event in the world, bringing together more than 45,000 participants from over 70 nationalities. This is a huge honor and an important milestone for our…The Global LMNA Cardiac Network Continues to Grow: Meet Our Country Representatives
January 14, 2026
We are proud to share an important milestone in the growth of the LMNA Cardiac Diseases Network. Our global community now includes close to 1,000 LMNA patients in 67 countries, and with this expansion, we are excited to introduce our first official country representatives. These representatives play a vital role…Announcing LMNA Cardiac In-Person Patient Meeting — Stanford University, California | May 2026
January 8, 2026
We are pleased to announce the next LMNA Cardiac In-Person Patient Meeting taking place in Stanford, California in May 2026. Following the success of our first U.S. in-person patient meeting in Raleigh, North Carolina, this event will once again bring together patients, family members, caregivers, clinicians, researchers, and advocates from…Together, We’re Making a Rare Disease Less Rare — Wishing Our LMNA Community Happy Holidays
December 24, 2025
🙌 We’re grateful for the incredible LMNA cardiac community! The LMNA cardiac network now includes over 3,500 people worldwide — patients, families, cardiologists, researchers, and experts, all connected through LMNA-related cardiac diseases. We’re deeply thankful for the support, engagement, and commitment across this community. As we look ahead to the…New Virtual Patient Meeting Dates Announced for 2026
December 24, 2025
We are happy to share that the virtual LMNA Cardiac patient meeting dates for 2026 are now available. 2026 Meeting Dates Please note that we have moved the December meeting. With the holiday season, Christmas, and New Year’s celebrations, December can be a challenging time for many community members to…LMNA-331 Research Update: Progress, Insights, and How You Can Help
December 24, 2025
Over the past year, significant progress has been made within the international LMNA-331 research program, focusing on individuals carrying the LMNA R331Q variant. This inherited form of cardiomyopathy can vary greatly in severity—even among members of the same family—ranging from mild symptoms to severe arrhythmias and advanced heart failure. What…LMNA Cardiac Video Series — Episode 2 Now Available!
December 16, 2025
We are excited to share that Episode 2 of our LMNA Cardiac Video Series is now live on YouTube! This ongoing series continues our mission to support, educate, and connect members of the LMNA community through personal stories, expert conversations, and insights into living with LMNA-related cardiac conditions. Following the…Dutch LMNA Patient & Gene Carrier Day – Saturday, April 18th 2026
December 12, 2025
We’re happy to announce the date for the Dutch LMNA Patient and Gene Carrier Day 2026 (will be held in Dutch) — an in-person gathering for people living with an LMNA mutation and their families in the Netherlands. 📍 Location: Amsterdam UMC, AMC location📅 Date: Saturday, April 18, 2026 This…Invitation to Participate: International PGT Survey for Individuals with an LMNA Variant
November 28, 2025
Following the recent webinar on Pre-implantation Genetic Testing (PGT) for LMNA Cardiomyopathies—for which the recording is already available on our website—we would now like to share an important opportunity to contribute to ongoing research. Researchers at Maastricht University Medical Center+ (MUMC+) are conducting an international survey to better understand how…
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DonateDonateYou can make a difference in various ways: by committing as a regular monthly donor, offering a single donation, organizing fundraising events both online and in person, contributing to our special tribute funds, or through your unique fundraising initiatives!