March 2025 | LMNA Cardiac Newsletter

LMNA Cardiac Updates: Paris Dinner | Online Meeting | Expert Webinar | Patient Stories | Research Registry

LMNA Cardiac Updates

LMNA Patient Dinner in Paris | Online Meeting | Expert Webinar | Patient Stories | Research Registry

Dear LMNA Cardiac,

Greetings from LMNA Cardiac! We’re thrilled to bring you the latest updates, events, and stories as we continue to connect, support, and empower patients, families, and advocates. From an in-person gathering in Paris to online patient meetings and expert-led webinars, there are countless ways to engage and learn. We’re also excited to spotlight inspiring stories like Jocelynn’s journey and share news about the groundbreaking Genetic Cardiomyopathy Registry.

Thank you for being part of this vibrant community—together, we’re advancing awareness, research, and hope. Let’s dive into our latest updates!

Join Us for the LMNA Patient Dinner in Paris – May 22nd, 2025

We are excited to announce a special Patient Dinner taking place on May 22nd, 2025, at 20:00, during the Laminopathies meeting in Paris. This event will be held at a restaurant near the conference venue, offering a wonderful opportunity for patients, families, and supporters to connect, share experiences, and enjoy an evening together.

To help us plan accordingly, please register for the LMNA Patient Dinner using this registration form. Spaces may be limited, so we encourage you to sign up as soon as possible to secure your spot.

We look forward to seeing you in Paris for this meaningful gathering! For any questions, feel free to reach out to us via email: info@lmnacardiac.org.

More information and registration

Online LMNA patient meeting – March 2025

Join us for the upcoming online LMNA patient meeting on March 30th, 2025! Connect with others, share experiences, and learn more about living with LMNA-related conditions.

Time: 12:00 PM – 1:30 PM EST
Location: Google Meet

Register for the online LMNA patient meeting

Upcoming Webinar: Dr. Dominic Abrams on LMNA Cardiomyopathy

We’re excited to announce an upcoming webinar with Dr. Dominic Abrams from Boston Children’s Hospital, hosted by the LMNA Cardiac Diseases Network.

Dr. Abrams is a leading expert in LMNA cardiomyopathy and cardiovascular genetics, bringing valuable insights to our community.

🗓 Date: Wednesday, June 4th
⏰ Time: 10:00 AM EST (Boston time)
📍 Registration: LMNAcardiac.org

Don’t miss this opportunity to learn from one of the top specialists in the field. Register today!

More information and registration

Jocelynn’s Journey as an LMNA Patient

Jocelynn’s chest discomfort led to a years-long search for answers, revealing a rare genetic heart condition as an LMNA patient. At Tampa General Hospital (TGH), the region’s only academic health system, she found expert care. Now, a revolutionary extravascular ICD protects her heart, giving her hope through TGH’s innovative approach. Watch her story on TGH’s Facebook page.

Watch the video – Jocelynn’s Journey

Genetic Cardiomyopathy Registry Now Open!

Recently, the Genetic Cardiomyopathy Awareness Consortium launched the Genetic Cardiomyopathy Registry, an online initiative to advance research for treatments and cures. Eligible participants—those with genetic cardiomyopathy, suspected gene mutations, or a family history—can join by completing short surveys (about 20 minutes). Hosted by NORD® on their IAMRARE® platform and sponsored by The DCM Foundation, this registry is a vital step forward.

Learn more or sign up: Genetic Cardiomyopathy Registry

More info about the Genetic Cardiomyopathy Registry

Thank you for being a part of the LMNA Cardiac community. Together, we make a difference! ❤️

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Every contribution, regardless of its amount, fuels crucial efforts in research, medical education, patient advocacy, and raising awareness about LMNA cardiac diseases.

You 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!

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March 2025 | LMNA Cardiac Newsletter

LMNA Cardiac Updates

Join Us for the LMNA Patient Dinner in Paris – May 22nd, 2025

Online LMNA patient meeting – March 2025

Upcoming Webinar: Dr. Dominic Abrams on LMNA Cardiomyopathy

Jocelynn’s Journey as an LMNA Patient

Genetic Cardiomyopathy Registry Now Open!

Recent News

Announcement: LMNA-331 Research Collaboration Between LMNAcardiac.org and Maastricht University Begins

Walking for a Cure: Dutch Team Raises Awareness and Funds for LMNA-Related Heart Disease

FDA Clears Nuevocor’s IND for NVC-001 Gene Therapy Targeting LMNA-Related Dilated Cardiomyopathy

Understanding Cardiomyopathy from LMNA Experts

LMNA Cardiomyopathy Unveiled: Expert Insights from Dr. Dominic Abrams

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