Let your voice be heard.
Are you an ALSP patient or care partner interested in sharing your experiences? Do you want to participate in panels, focus groups, listening sessions, drug development, or product reviews? Get in touch with us to hear about opportunities to be the voice of ALSP.
ALSP: Symptom, Impact & Treatment Survey
ALSP patients and care partners, we need your help to let our voice be heard! Our ALSP Symptom, Impact & Treatment Survey is open to all patients (both symptomatic and asymptomatic) and current or past care partners.
This survey is an opportunity for you to share how ALSP symptoms impact daily life and your opinions about clinical trial participation and outcomes. The information gathered in this survey will provide valuable insights to researchers as they continue to study this disease to find potential therapies. It will also provide valuable insight to the FDA as they work with pharmaceutical companies looking to get potential ALSP therapies approved.
The insights gained in this survey will be shared at the ALSP Externally-Led Patient Focused Drug Development (EL-PFDD) meeting that will be held on June 20, 2025, as well as the summary of that meeting - “Voice of the Patient” report - that will be published for public use.
The survey is voluntary and will take approximately 30 minutes to complete. Information collected in this survey will be anonymous. Surveys need to be completed by March 3, 2025.