Privacy Policy

Our approach

The ALS/MND Directory is built by ALS patients, for the ALS community. We treat your privacy as a matter of dignity. We collect as little as possible, never sell data, and never use advertising trackers.

On September 9, 2026 we removed Google Analytics and PostHog from this site entirely, including session recordings. We now use only our own first-party measurement, which stores no cookie, no IP address, no account id and no device or browser identifier.

What we measure, and exactly what is stored

Every item below is stored on our own servers with nothing that could identify or re-identify you. There is no visitor id, no session token, no fingerprint, no IP address and no browser or device string.

• Page views — the page path, an optional two-letter country guessed from your browser's language setting, and the time.
• Search terms and filter choices — the words typed into the directory search and which filters were used, with the time. Stored on their own, never linked to a person or a session.
• Organization clicks and views — which organization was opened or which of its Website / Call / Email / Directions links was tapped, the page it came from, the same country guess, and the time.
• Performance timings — how long a page took to load, plus error status codes, so we can spot a broken or slow page.

Repeat views are counted once per browsing session using your browser's own temporary storage. Nothing about you is sent to us to make that work.

Information you give us

• An optional account (email and password, or sign-in with Google) — needed only to publish a community profile or review, claim a listing, or administer the directory. Browsing works fully signed out.
• Voluntarily submitted profile information and community stories.
• Organization submissions and correction reports.
• Reviews you choose to publish.
• Messages sent through the contact form.

Saved organizations (favorites)

Organizations you save with the heart icon are stored in your own browser, on your device. Nothing is sent to us, and no account is needed. Clearing your browser data clears the list. If you have an account, you can turn on "Sync favorites to my account" in the Saved view — only then is your list stored on our servers, tied to your account and readable only by you. Sharing a saved list creates a plain link containing the organization IDs; we don't store the list behind it.

Crash reports

When something breaks, an automatic report is sent to our error-tracking vendor (Sentry) containing the error message, the technical stack trace, and the page path. It is configured to exclude personal data: no IP address, no account id, no cookies.

What we don't collect

No advertising or retargeting pixels. No third-party analytics. No session recordings or heatmaps. No cross-site tracking cookies. No medical records, health data, insurance information or genetic data — beyond what people voluntarily choose to publish in a community profile.

Health-related searches

Searching for ALS/MND resources here does not create a medical record. Search terms are stored only as standalone words with a timestamp, so trending needs can be understood; they are never linked to you, your account or your other activity, and are never sold or shared.

Cookies

We set no analytics or advertising cookies. If you sign in, a cookie keeps you signed in. Your language choice and saved comparison list are kept in your browser's own storage and never sent anywhere.

Third-party services

We rely on a small number of trusted vendors to operate the site:

• Supabase — database and authentication.
• Stripe — payment processing for listing subscriptions.
• Sentry — crash reports, configured without personal data.
• OpenStreetMap — map tiles.

Each vendor has its own privacy policy linked above.

Data retention

• Account data is retained until you delete your account.
• Organization data is retained as long as the directory operates.
• Contact form messages are retained for 90 days.
• Anonymous counts (page views, searches, clicks, timings) are retained as aggregate history; because they contain no identifiers, they cannot be traced to a person.

Your rights

You can request deletion of your account and all associated data by contacting us. You can export your profile data at any time.

Children

This site is not directed at children under 13, and we do not knowingly collect data from children.

Contact

For privacy concerns, contact seth@alscrowd.org.