September 2024 | LMNA Cardiac Newsletter

LMNA Cardiac Newsletter – September 2024

International Meeting on Laminopathies | LMNA Patient Meeting | Donate Blood for LMNA Research | Research Studies & Clinical Trials | Our Co-Founder’s U.S. Tour

🔬 International Meeting on Laminopathies: Save the Date!

Join us for the 5th International Meeting on Laminopathies from May 21-23, 2025, in Paris, France! This premier event will showcase the latest research and advancements in laminopathies, featuring:

• Expert Presentations: Learn from leading scientists and clinicians.
• Patient Organizations: Connect with advocacy groups and hear patient stories.
• Collaborative Discussions: Engage in meaningful dialogues on the future of laminopathy research.

Don’t miss this unique opportunity to connect with key players in the field!

👉 More Information

🗓️ LMNA Patient Meeting – September 2024

Join us for a virtual group chat for patients with LMNA gene mutations on September 15th from 12-1:30pm EST (6-7.30pm CEST).
This session is a fantastic opportunity to:

• Connect with fellow patients.
• Ask questions and gain insights.
• Receive support from those who truly understand your experience.

👉 Join the Patient Meeting

🩸 Donate Blood for LMNA Research

We are excited to announce the expansion of our global network of partner labs to facilitate blood donations for LMNA cardiac research. Your donation can help:

• Advance understanding of LMNA cardiac diseases.
• Improve patient care through new treatments.
• Directly contribute to groundbreaking studies.

Make a difference today by donating blood and supporting vital research!

👉 Learn How You Can Help

📚 Research Studies & Clinical Trials

Research studies are crucial for advancing our understanding of LMNA-related conditions and improving patient care. We invite you to:

• Express interest in participating in upcoming studies.
• Contribute to groundbreaking research on LMNA cardiac diseases.
• Stay informed about new trials and research opportunities.

👉 Learn More / Register for Studies

🌍 Expanding Our Network: Co-Founder’s U.S. Tour

As part of our ongoing LMNA Promotion and Awareness Campaign, our Co-Founder Stefan and his family will be touring the U.S. for 2 to 3 months. The goal is to:

• Meet with LMNA patients and listen to their stories.
• Connect with researchers and experts to foster collaborations.
• Raise awareness about LMNA cardiac diseases.

Are you based in the U.S. and interested in connecting with Stefan? We’d love to hear from you!

👉 Learn More / Meet with Stefan / Follow the Tour

Join LMNA Cardiac’s Hybrid Indoor Cycling Event!🚴

Mutations in the lamin gene can cause serious heart muscle disease, requiring extensive research for solutions. The Netherlands Heart Institute and LMNAcardiac are leading a large international study on hereditary factors, exploring causes, consequences, and treatments. This study, involving three generations of a family, aims to understand the impact of personal circumstances on the disease, enhancing treatment options.

Date: November 10th, 2024
Time: 4 pm – 7 pm CET

Venue: Hybrid – in-person at the Netherlands Heart Institute, Utrecht (The Netherlands), or online.

Help us raise money for LMNA research – will you join us?

LMNA PRIORITY Project Awarded Prestigious Leducq Grant

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

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