Your story has the power to shape the future of Nemaline Myopathy research!
By completing the AFBS Perspectives and Priorities Survey, you’re not just answering questions– you’re providing the vital, firsthand information that our community needs. Your unique perspective on the lived experience of NM is invaluable!
The data you provide will be compiled and developed into a published paper with the assistance of neuromuscular disease experts later this year, with the results then made available to researchers and clinicians worldwide to help them deepen their understanding of the disease, giving them crucial insights they need to understand NM, refine care, and accelerate progress toward new treatments.
Additionally, your answers will directly help AFBS leadership prioritize what comes next, guiding us to create new resources and initiatives that best serve our community.
Whether you are an affected individual or a caregiver, your voice is essential. The survey takes less than 15 minutes and is one of the most powerful ways you can contribute to NM research and advocacy.
Please complete the survey by October 31, 2025 and help us build a stronger future for the NM community!