LMNA cardiac - LMNA Related Cardiac Diseases Information and Network
Worldwide
Joined February 2022
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⏱️❤️ What an incredible Ticking Clock Challenge!
Last week, together we raised €15,027 for LMNA research!
A huge thank you to Stichting PLN for organizing this amazing event — and to everyone who joined and supported us! 🙌
#ActionForLMNA #LMNA
Tomorrow is the big day! ❤️
At Circuit Zandvoort, we’re taking steps for more research into inherited heart muscle diseases like LMNA.
Every donation counts. Will you support us? ❤️
👉 detikkendeklokchallenge.nl/p…
#LMNA #TikkendeKlokChallenge
4 days to go! ❤️
This Sunday: Circuit Zandvoort. Every step counts.
Join us and support LMNA research. 🏃❤️
detikkendeklokchallenge.nl/l…
🧬 Free webinar: LMNA Gene Therapy & SUNBEAM-LMNA Trial
📅 Sept 9 | 6–7 PM ET
Learn about NVC-001 and the SUNBEAM-LMNA clinical trial, now enrolling in the U.S.
Can’t attend live? Register to receive the recording.
🔗 us06web.zoom.us/webinar/regi…
Next week, we’re at the starting line 💙
On September 6, we walk & run for more awareness and research into PLN & LMNA.
Every step counts. 🏃❤️
Join us: detikkendeklokchallenge.nl/l…
💙 New LMNA Patient Story
Deana Archibald shares how loss shaped her mission to advocate for her children and the LMNA community.
🎥 lmnacardiac.org/patient-inte…
#LMNA #PatientAdvocacy
❤️ Help move LMNA research forward!
On Sept 6, we’re taking on Circuit Zandvoort to raise funds for research into LMNA-related heart disease.
🏃Join us: detikkendeklokchallenge.nl/l…
🙏Donate: detikkendeklokchallenge.nl/p…
#LMNA #LMNACardiac #fundraiser #research #heart
💙 Thanks again to everyone who made our last #LMNA fundraiser such a success.
Our aftermovie also marks the start of our next fundraiser.
Join us:
detikkendeklokchallenge.nl/p…
Our heroes 🦸♂️
Thank you, Action for LMNA ❤️
#LMNA #DCM #4daymarches #LMNADCM #fundraising #raredisease #actionforlmna
❤️ Today it begins!
21 incredible walkers are taking on the 200 km Nijmegen Four Days Marches to support Action for LMNA. Every step raises awareness and funds for vital research into LMNA-related genetic heart disease.
Please support our team! ❤️
#ActionForLMNA #LMNA #Nijmegen
Honored to receive the Wiek van Gilst Collaboration Prize! 🏆
A recognition of the incredible collaboration between patients, families, researchers, clinicians, and partners working to improve outcomes for the LMNA community.
#LMNA #RareDisease
❤️ Marco’s LMNA story
From cycling & sports to sudden symptoms and second pacemaker.
One mutation affecting hundreds of thousands worldwide.
Support Action for LMNA 👇
EN: LMNAcardiac.org/donate
NL: stichtinglmnacardiac.devierd…
#LMNA #ActionForLMNA
🚨 Why we fight on
Rogier (donor heart) & Marco (LMNA patient) share how one gene mutation turns life upside down.
Rogier: “I want to eliminate LMNA heart diseases”
Support the campaign 👇
EN: LMNAcardiac.org/donate
NL: …mnacardiac.devierdaagsespons…
#RareDisease #ActionForLMNA
Great afternoon at the 2nd Dutch ‘Action for LMNA’ volunteer meeting ❤️🩹
Volunteers and researchers came together to plan our 200km walk for cardiolaminopathy research. Thanks to everyone involved!
stichtinglmnacardiac.devierd…
Only a few more days until the LMNA in-person meeting at Stanford (May 13–14)! Looking forward to seeing everyone there. Great agenda and speakers planned.
Still possible to register — especially if you’re in the SF / Bay Area. Please help spread the word to patients and experts.
Still buzzing after the first Dutch LMNA Patient Day! ❤️
Big thanks to Amsterdam UMC for hosting and sharing the latest on LMNA cardiomyopathy.
Thank you to all patients, gene carriers & families who joined — you made it special!
#LMNA #Cardiomyopathy #AmsterdamUMC
