This is a time of unprecedented progress in neuromuscular disease research and care, and our mission at MDA to help save and improve the lives of those living with muscular dystrophy, ALS, spinal muscular atrophy and other neuromuscular disorders is more urgent than ever.
To fulfill our mission promise, we know it is important to have as accurate a picture as possible of the needs and experiences of the community we serve. Over the last year, we have heard from many of you — more than 20,000 — who sought one-on-one support via MDA’s National Resource Center. We are now reaching out to learn more so we can ensure we have the most comprehensive understanding possible about the needs of our community.
For this reason, we have launched our first-ever patient experience survey. This tool is designed to provide a statistically accurate snapshot of the experiences and needs of our community — the people who live with or love someone with neuromuscular disease.
The insights we gain from this survey will help us better address critical unmet needs as well as key information gaps. Importantly, your responses not only will inform MDA’s programs but will help the broader community have a greater understanding of the needs of those living with neuromuscular disease.
The goal is to gain clear, actionable information that MDA can use to improve the lives of those living with or caring for someone with neuromuscular disease. For the thousands who have already participated in the survey, we would like to thank you. For those who have not yet had a chance to take the survey, we hope you will participate in this important endeavor by sharing your insights today.
Share your feedback today!