August 2024 | LMNA Cardiac Newsletter

LMNA news update – LMNA Cardiac Diseases Network

Dear LMNA Cardiac,

Welcome to the latest edition of the LMNA Cardiac newsletter!

This issue brings exciting updates from the LMNA Cardiac Diseases Network, including our ongoing research studies and clinical trials, opportunities to support our cause through blood donation, and the latest on our promotion and awareness campaign. Be sure to mark your calendars for the LMNA patient meeting in September, where you can connect with others and learn more about living with LMNA-related conditions. Plus, don’t miss news about our Co-Founder’s upcoming US tour aimed at strengthening connections and raising awareness.

LMNA patient meeting – September

Please join us for our video group chat for patients with LMNA gene mutations on September 15th from 12-1:30pm EST (6-7.30pm CEST). The chat is a great opportunity to connect with other patients, ask questions, and gain support from people who “get it”.

Register for LMNA patient meeting

Donate Blood for LMNA Research

LMNA Cardiac is excited to share that we are building out a global network of partner labs to help us with collecting blood donations. These blood donations will be used to advance our understanding of LMNA cardiac diseases and improve patient care.

By donating your blood, you can directly contribute to groundbreaking studies aimed at understanding disease mechanisms, developing new treatments, and improving the quality of life for patients. Your contribution can make a significant difference.

Learn more about how you can help at LMNA Cardiac.

LMNA blood donation

Research Studies & Clinical Trials

Research studies are essential to advancing medical knowledge and improving patient care. They encompass various types of investigations designed to explore new medical treatments, understand disease mechanisms, and evaluate the effectiveness of interventions.

We invite you to express your interest in participating in research studies focused on LMNA-related conditions. By registering, you will be notified about upcoming studies that you may be eligible for, ensuring you have the opportunity to contribute to groundbreaking research.

Want to learn more / register? 👉

Research Studies & Clinical Trials

Expanding Our Network: Our Co-Founder’s Upcoming US Tour

We are excited to share the progress of our LMNA Promotion and Awareness Campaign through LMNAcardiac.org, our dedicated network for LMNA cardiac diseases. The growing visibility and focus on LMNA cardiac diseases have led to increased funding for research, including the recent Leducq grant. To further strengthen our network and raise awareness in the US, our Co-founder Stefan and his family will be traveling for 2 to 3 months to meet with LMNA patients, experts, and researchers. This visit aims to foster connections, build a stronger network, and increase awareness about LMNA cardiac diseases. If you are an LMNA patient or researcher based in the US and would like to connect with Stefan, please let us know. We look forward to scheduling a meeting with you!

Learn more / Meet with Stefan / Follow 👉

Our Co-Founder’s Upcoming US Tour

Support Groups

If you or a loved one is navigating the challenges of heart disease, these support groups offer a compassionate community to share experiences, gain strength, and find hope. At LMNA Cardiac, we understand what living with a heart condition feels like, but you don’t have to go through it alone.

The support groups provide a safe space for patients and their families to connect, learn, and encourage each other.

Support groups

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?

Sign up to participate / fundraise

LMNA PRIORITY Project Awarded Prestigious Leducq Grant

The PRIORITY project has received a grant of $8,000,000 from the Leducq Foundation. The grant was awarded to the consortium for research into dilated cardiomyopathy (LMNA-DCM). The project is called PRIORITY: Cardio-LaminoPathy: fRom pathomechanIsms tO peRsonalIzed TherapY.

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Show Your Support

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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August 2024 | LMNA Cardiac Newsletter

LMNA patient meeting – September

Donate Blood for LMNA Research

Research Studies & Clinical Trials

Expanding Our Network: Our Co-Founder’s Upcoming US Tour

Support Groups

Join LMNA Cardiac’s Hybrid Indoor Cycling Event!🚴

LMNA PRIORITY Project Awarded Prestigious Leducq Grant

Recent News

5th International Meeting on Laminopathies

Expanding Our Network: Our Co-Founder’s Upcoming US Tour

LMNA PRIORITY project awarded prestigious Leducq grant

PSIDER-Heart and LMNA Heart Disease

April Patient Meeting with Guest Rogier Veltrop

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