laminopathies advocate/activist, LMNA DCM, FPLD, EDMD2, progeroid syndromes. End USA price gouging/End๐ตbarriers to transplant. End USA For-Profit healthcare.
Publication and presentation roundup โ Spring 2026 | UNC School of Nursing โWhat I Wish I Knew; The Reality of Heart Transplant,โ by Sara Mack, et. al โฆ@MGHMedicineโฉ โฆ@mgh_mpecโฉ โฆ@BWHIntCardโฉ https://t.co/sSWZ05Nf6d
Dr. Neal Lakdawala will speak "Genetic Dilated Cardiomyopathy: Insights, Research, and 2026 Clinical Trials". He is a cardiologist & cardiovascular genetics specialist. He will discuss genetic DCM and introduce the DCM Share Project. Learn more & register: https://t.co/yxVIKlIGjk
๐ International LMNA community: Sponsored walk for LMNA cardiac research.
๐ Reg opens Feb 9, 10:00 CET (very limited).
๐ Limited tickets (โฌ120) + help with paid accommodation for international guests.
๐ฉ Email us to get on the list.
๐ฅ https://t.co/FPq7WVscq9
#LMNAcardiac
๐ซ Help us accelerate understanding of LMNA heart disease.
Weโve partnered with @CitizenHealthHQ to empower patients and advance research.
If youโre living with an LMNA gene mutation or LMNA heart disease, join us:
๐ https://t.co/vCce5w5s87
#LMNA#RareDisease#Cardiomyopathy
๐ซ From Nov 2โ3, the LMNA Cardiac community met in Raleigh, NC for our first U.S. in-person patient meeting โ two inspiring days of connection, learning & collaboration with patients, experts & BridgeBio at their Gene Therapy Lab๐
You can now get genetically RETESTED for free! Our partners at GCAC are collaborating with a genetic testing company to provide FREE testing. Retesting ensures you have the most accurate info, which can be crucial for your care and your family's health: https://t.co/K7lBOcyDIx
๐๐๐ฅ๐ฉ ๐ฌ๐ฉ๐ซ๐๐๐ ๐ญ๐ก๐ ๐ฐ๐จ๐ซ๐ ๐๐๐จ๐ฎ๐ญ ๐๐๐๐ ๐ก๐๐๐ซ๐ญ ๐๐ข๐ฌ๐๐๐ฌ๐
๐ Download the flyer
๐จ๏ธ Print & hang it during your next hospital visit or ๐ง email it to your medical team.
๐ Ask your doctor or clinic if you can post it in their office or waitingroom.
Please spread the word about this foundation dedicated to dilated cardiomyopathy caused by mutations in the LMNA gene. It helps connect patients and provide them with resources and connections to clinicians and researchers.
You can now get genetically RETESTED for free! We are, as a GCAC partner, collaborating with a genetic testing company to provide FREE testing.
๐ https://t.co/OQb2ZY71PP
#genetictesting#lmna#dcm#gcac#lmnacardiac#testing
Pls share this info about #LMNA-DCM. We are born with a genetic mutation in the LMNA gene that causes a causes a rare progressive very serious heart muscle disease. Today there is no cure. @LmnaCardiac working to find a cure and bring us patients and experts together ๐โค๏ธ