The CMDIR is a global partnership of patient advocacy organizations, researchers, and clinicians, all working toward the same goal: to find treatments for congenital muscle disease.
We Need You!
Your participation is vital to advancing research and to help experts.
How Do I Benefit?
Registration affords you a variety of benefits including notifications, learning, awareness, and community involvement.
Leading the Way to Treatments Begins With You
As someone affected by a muscle disorder, you have the power to help advance research to better understand CMD and find treatments. Your voice and the data that you contribute can help identify and answer the questions that matter most.
By registering, you’ll receive:
- Notice of available clinical trials or treatments relevant to your muscle disorder
- Connection with affected individuals and families in the neuromuscular community
- Educational resources to learn more about your disorder
- Opportunities to participate in awareness and advocacy projects
- The opportunity to contribute to the development of clinical trials, which are needed to identify treatments and improve quality of life
Your participation is vital to advancing neuromuscular research and to help experts:
- Understand the natural course of your disorder
- Understand the affected individual and caregiver perspective
- Recruit for clinical studies and trials
- Calculate prevalence estimates
- Attract pharmaceutical investment
- Maintain and grow federal funding and research
- Grow awareness and advocacy for CMD and other rare diseases
Registries inform research, clinical trial design, and play a critical role in learning about the natural course of a disorder.
Check out the list of diagnoses we register. We also encourage anyone to register who has congenital-onset muscle weakness but no diagnosis to-date.