LMNA Cardiac News
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 — 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 event will bring together Dutch…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…LMNA Cardiac: Slides & Recordings from First U.S. In-Person Patient Meeting Now Available Online
November 28, 2025
The LMNA Cardiac Diseases Network is pleased to announce that all slides, presentations, and the recording from our first U.S. in-person patient meeting are now available on LMNAcardiac.org. The LMNA in-person meeting in Raleigh, held November 2–3, 2025, brought together patients, families, clinicians, researchers, and industry partners for two days…Webinar Recording Now Available: Preimplantation Genetic Testing for LMNA Cardiomyopathies
November 22, 2025
We are pleased to share that the recording of our recent webinar on Preimplantation Genetic Testing (PGT) for LMNA Cardiomyopathies is now available. This session brought together experts to discuss how PGT can help families affected by LMNA-related cardiomyopathies make informed reproductive decisions. The webinar covers current scientific insights, practical…Introducing Our New LMNA Cardiac Video Series
November 10, 2025
We’re excited to announce the start of a new series of video interviews and webinars hosted by Alfredo Hernandez — created to bring more support, education, information, and awareness to our LMNA community. In this ongoing series, we’ll feature conversations with patients, families, medical professionals, and other key voices connected…LMNA Cardiac Community Meets in Raleigh for First U.S. In-Person Patient Meeting
November 8, 2025
🫀 From November 2–3, the LMNA Cardiac community gathered in Raleigh, North Carolina, for our first U.S. in-person patient meeting! It was an inspiring two days filled with connection, learning, and collaboration between patients, researchers, clinicians, and industry partners — all united by a shared goal: finding solutions for LMNA…
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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!