Observed arrival · 2026-11-11
ALS Map asks patients for the long version
A multilingual questionnaire invites people living with ALS/MND and their families to share personal histories for research into patterns across their experiences.
- For
- People living with ALS/MND and their families
- Worth noticing
- The page reports 112 participants, including 71 verified stories, and presents the questionnaire in 17 languages.
Field notes
Visitors can begin with an email address or Google, then receive a one-time link and code; the questionnaire is described as optional, resumable, and roughly 30–60 minutes. The privacy notice says the project is run by a private person in Türkiye and lists typed or recorded answers, uploaded documents and voice recordings, sign-in email, language, and technical logs among collected data. It says anonymized data may be shared with a university or research team for ALS research.
Observed signals
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Editorial observations of this landing page, not a rating.
One card from the complete issue