November 2024 | LMNA Cardiac Newsletter

LMNA Cardiac Newsletter – November 2024

Please Join or Sponsor our Cycling event | Update on Stefan’s U.S. Tour | Citizen.Health | 5th International Meeting on Laminopathies 

Ride for a Cure: Join / sponsor our Hybrid Indoor Cycling Event for LMNA Research

We’re raising funds for LMNA research by organizing a Hybrid Indoor Cycling event 🚴‍♀️❤️

Please join us on November 10th 2024 (https://www.lmnacardiac.org/2024-cycling-event) or consider supporting us by donating through this link: https://donorbox.org/lmna-hybrid-cycling-fundraising-event/

Update on Stefan’s U.S. Tour

Stefan’s U.S. trip is going exceptionally well! He’s been having ongoing meetings with both experts and patients, fostering valuable connections and insights throughout his journey. Next, he’ll be in Texas, followed by a final stop in Florida to wrap up the tour.

Are you located in Texas or Florida and interested in meeting Stefan? We’d love to connect—send us an email at info@lmnacardiac.org!

Empowering the LMNA Cardiac Community through Data-Driven Care

Providing support and advancing treatments for the LMNA cardiac community is the mission of LMNAcardiac.org. A deep understanding of patient symptoms is critical to advancing meaningful care, which is why we chose to partner with Citizen.Health. They work with an innovative approach to gather essential data while also prioritizing patient experience.

This partnership is an important step in ensuring that the voices of those living with LMNA cardiomyopathy directly shape the future of treatment.

Upcoming: 5th International Meeting on Laminopathies

The 5th International Meeting on Laminopathies will bring together researchers, clinicians, and patient advocates to explore the latest advancements in laminopathy research and treatment. This event aims to foster collaboration and drive forward new insights for LMNA-related conditions.

For full details and information on how to join, visit here.

We’re planning on organizing a patient lunch on dinner during the meeting. More information to follow! Let us know if you are planning to be there and would like to join this patient meeting. 

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

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