ALS Research Watch

Privacy notice

Version 2026-11-01. Draft for owner review.

Who is responsible

This website is a private, non-commercial project run by its owner. Privacy questions can be sent to info@jason-als.org.

Visitors

The owner's profile

The profile on the contact page shows only the details the owner (or their legal representative) has chosen to publish, with their recorded consent. This may include a name, photo, date of birth, date of diagnosis, a short description, social media links and a bank account for donations. Medical records, test results, addresses and medical identifiers are never published. Consent can be withdrawn at any time, and any detail can be hidden immediately.

Administrators

For people with an editor or administrator account we store a username, email address, a securely hashed password, an authenticator-app secret for two-factor sign-in, and a log of security events (sign-ins, publishing actions). This is needed to run the site securely and is kept for as long as the account exists, plus 12 months for the security log.

Your rights

Under the EU General Data Protection Regulation (GDPR) you can ask to access, correct or delete personal data about you, object to its use, or restrict it. You can also complain to the data protection authority in your country. We aim to answer requests within one month.

Security

The site is served over HTTPS. Administrator access requires a strong password and a second factor, and failed sign-in attempts are rate-limited. Uploaded files are checked, stored privately and stripped of hidden metadata before any public display.