A Foundation Building Strength

Participate in Research

There are several ways you can personally help to advance research right now. See below for actions you can take as an NM-affected individual or caregiver to help accelerate the search for effective treatments:

GENETIC TESTING

Accurate confirmation of your Nemaline Myopathy diagnosis and genetic subtype is one of the first steps you can take to help researchers track prevalence and disease development.

REGISTRIES

Join these genetic registries to share your anonymized data with researchers and help researchers determine if you are a candidate for possible future clinical trials.

BIOBANK

The Beggs Lab NM Biobanking Program is a central repository for NM tissue samples, serving as a vital resource for researchers worldwide. Donate a tissue sample to help advance research!

NATURAL HISTORY STUDIES

AFBS is proud to have launched several ongoing Nemaline Myopathy Natural History Studies to study disease development and pave the way for future clinical trials. Sign up to participate now!

FOR YOUR CARE TEAM

Share these valuable resources directly with your care team!