LMNA Cardiac News
Information evening: Preimplantation Genetic Testing for LMNA- cardiomyopathies
October 20, 2025
For patients with a LMNA-cardiomyopathy there are different reproductive options. One of those options is preimplantation genetic testing (PGT). PGT is a reproductive technology that selects embryos without the genetic variant to be placed back during an IVF procedure. This method reduces the risk of cardiomyopathy development in their children.…Webinar Recap: Transforming Cardiomyopathy Care – Closing the Gaps in Genetics and Support
October 19, 2025
Hosted by the DCM Foundation and LMNAcardiac.org Earlier this week, the DCM Foundation and LMNAcardiac.org co-hosted a powerful webinar titled “Transforming Cardiomyopathy Care” — bringing together clinicians, genetic counselors, nurses, and patient advocates to tackle two major gaps in cardiomyopathy care that continue to put patients at risk: Why Genetics…LMNA In-Person Patient Meeting in Raleigh, North Carolina – November 2–3, 2025 – Registrations are still open
October 7, 2025
LMNAcardiac.org is hosting its next in-person patient meeting this fall on November 2–3, 2025, in Raleigh, North Carolina, U.S. This two-day gathering will bring together individuals and families affected by LMNA-related cardiac conditions, alongside leading researchers and clinicians. The meeting will foster connection, share the latest scientific updates, and support…Webinar on LMNA-related Heart Diseases (Dutch)
October 7, 2025
Date: Thursday, 16 October 2025Time: 19:30 – 20:30 (CET)Location: OnlineCost: Free About the event The LMNA gene plays a crucial role in the structure of our cells. A mutation in this gene can lead to heart and muscle problems, such as a weakened heart muscle (cardiomyopathy), heart failure, or cardiac…Introducing HeartFuel: A Medical Nutrition Approach for Inherited Cardiomyopathies
October 7, 2025
A new initiative led by heart transplant recipient and researcher Rogier Veltrop explores how targeted nutrition may help support heart energy metabolism in people living with inherited cardiomyopathies. Researchers around the world are studying how the heart produces and uses energy, and growing evidence suggests that energy balance can be…Webinar: Living with Heart Failure
August 7, 2025
A Candid Conversation with Dr. Samuel Sears Join us for a hope-filled discussion on the emotional journey of heart failure Are you or a loved one navigating the psychological challenges that come with heart failure? Don't miss this essential Q&A webinar featuring internationally recognized cardiac psychologist Dr. Samuel F. Sears.…Dutch LMNA Patient & Gene Carrier Day – Saturday, April 18th 2026 (new date)
July 31, 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…Thank You, Team Action for LMNA 🌟
July 23, 2025
We at LMNAcardiac.org are incredibly grateful to Team Action for LMNA for their outstanding achievement at the recent 4 Days Marches. This inspiring initiative, Action for LMNA, was planned and led by Karen and extra promoted and accelerated by Bernard. Together with their fantastic team, they walked with determination, raised…Help Us Raise Awareness for LMNA-Related Heart Disease: Your Support Is Needed (Flyer)
July 21, 2025
Have you or someone you love been diagnosed with an LMNA gene mutation? LMNA-related heart disease is rare but serious, and we urgently need your help to spread the word and grow our global patient network. At LMNAcardiac.org, we are building a supportive, patient-led community for individuals and families affected…Announcement: LMNA-331 Research Collaboration Between LMNAcardiac.org and Maastricht University Begins
June 28, 2025
We are proud to share that LMNAcardiac.org has initiated a new multi-year research project at Maastricht University (Dept. of Biochemistry, CARIM), led by Dr. Rogier Veltrop and Prof. Leon Schurgers. The project, titled “LMNA-331,” focuses on mechanobiochemistry and cell signalling of LMNA-related cardiomyopathies. This four-year PhD program will utilize advanced models, including LMNA-iPSC derived…
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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!