You are not alone.
A rare diagnosis can feel isolating. We've been there. Here's how we hope to help, and where you can find trusted information today.
Support built by a family, for families
Our family programs are just getting started. Here's what we're working toward.
Family connection
Introducing families facing L-CMD to one another, so you can share experiences, advice, and encouragement.
Practical help
Help with costs like equipment, travel to specialists, and other needs that insurance often doesn't cover.
Guidance
Helping newly diagnosed families understand next steps, find specialized care, and connect with research opportunities.
Where to learn more
These organizations offer reliable information, care guidance, and ways to take part in research.
Cure CMD
Information, care resources, and research on congenital muscular dystrophies, including LMNA.
L-CMD Research Foundation
A foundation dedicated to finding treatments for LMNA-related CMD.
Congenital Muscle Disease International Registry
Register your child so researchers and clinical trials can find you.
Muscular Dystrophy Association
Care centers, equipment help, and community support for neuromuscular diseases.
NIH GARD
The National Institutes of Health's rare disease information center.
ClinicalTrials.gov
Search current studies related to LMNA.
Newly diagnosed?
Send us a note. We'll share what we've learned and help you find your next step.