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.

What we collect

• Account information (email and password) for registered users.
• Voluntarily submitted profile information.
• Organization submissions added to the directory.
• Reviews you choose to publish.
• Messages sent through the contact form.

We do not collect search queries, browsing behavior, or IP addresses for tracking purposes.

What we don't collect

We do not collect medical records, health data, diagnosis information (beyond what users voluntarily share in community profiles), insurance information, or genetic data.

Analytics

We use privacy-friendly analytics to understand which pages are useful. We do not use retargeting pixels, advertising trackers, or share data with advertising networks.

Health-related searches

Searching for ALS/MND resources on this site does not create a medical record. We do not store, sell, or share search queries. Your use of this directory is private.

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.
• CARTO — 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.

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.