MOFF encouraged ALS families to participate in Survey 1 of the ALS Focus Survey Program. Survey 1 was an individualized survey that was developed by the ALS Association. The purpose of Survey 1 was to collect information to help ALS advocates fight for access to care and financial security for those affected by ALS.
Background: The ALS Focus Survey Program is a patient and caregiver led program that asks people with ALS and current and past caregivers about their needs and burdens. The goal is to learn as much as possible about individual experiences throughout the disease journey so that the whole ALS community can benefit.
All data collected is de-identified and shared free of charge to the entire ALS community.
Thank you very much for your time. We will post ALS Focus Survey 1 results once they are released to the public.
Click here to register for future ALS Focus Surveys