Inform your care team about important resources and information:
Inform Medical Providers: ICD Code for Nemaline Myopathy G71.21
In 2021, our community advocates were successful in getting an International Diagnostic Code (ICD) designated specifically for Nemaline Myopathy. Some NM clinicians, patients, and families may not know this yet, but it’s imperative that medical records of nemaline myopathy patients be properly coded to track prevalence and create a unified data set for researchers to study.
Message, call, or speak to your medical providers to educate them to ensure your medical records are being coded correctly. Your clinical billing office will need to be made aware of this, too. Tell them to use ICD-11 code G71.21 for all medical encounters.
Clinical Care Guidelines
Given their relatively low incidence, congenital myopathies remain unfamiliar to the majority of care providers, and the levels of patient care are extremely variable. The International Standard of Care Committee for Congenital Myopathies developed this Consensus Statement on Standard of Care for Congenital Myopathies, which aims to provide care guidelines for congenital myopathies.
Respiratory Care Webinar
This webinar is a must-watch for individuals affected by Nemaline Myopathy (NM), their caregivers, and anyone interested in learning more about respiratory health management.
Other Useful Resources for Your Care Team
These are great additional resources to share with your care team:
- Genetic Registries – Join these online registries to make your data count!
- Beggs Lab NM Biobank – Have a surgery coming up? Talk to our program director Stacy.Cossette@childrens.harvard.edu about providing a small tissue sample for the Nemaline Myopathy Biobank.
- Genetic testing support and resources – Free genetic confirmation programs.