Privacy Policy

When you register as a member, we collect: your full name, email address, phone number (optional), city, state/province, country, MND/ALS diagnosis type, diagnosis date, member status, a personal bio, and your interests.

We also collect your contact preferences — whether you're open to being contacted by other members via email or text message.

If you request viewer access, we collect your email, reason for viewing, and your relationship to MND/ALS.

Your city, state/province, and country are used to place you on the community map alongside other MND/ALS members.

When you register, we automatically look up the geographic coordinates of your city using a public geocoding service (OpenStreetMap). These coordinates are stored so your location displays correctly on the map.

Your exact street address is never collected or stored — only your city-level location.

Your profile (name, city, bio, interests, and contact preferences) is visible only to approved members of the Map Out MND/ALS community and approved map viewers.

Unapproved registrations are visible only to you and to site administrators.

Your email address and phone number are never displayed publicly on the map. Other members can only contact you if you have opted in to email or text contact.

Site administrators can view all member information for the purpose of managing the community.

All data is stored in a secure, encrypted database with role-based access controls.

Only authenticated users can access member data. Each member can only see approved community members.

Password authentication is handled securely — we never store or have access to your plain-text password.

Message conversations are private between the two participants. No one else can read your messages.

Your information is used solely to facilitate community connection — helping MND/ALS members find and connect with others near them.

We do not sell, rent, or share your personal information with third parties.

Your data is not used for advertising or marketing purposes.

Anonymous, aggregated statistics (such as total member count) may be displayed on the site, but never in a way that identifies individuals.

When you message another member, your email address is shared with that member so they can identify the conversation.

Messages are stored in our database and are visible only to you and the recipient.

You can delete your conversation history at any time.

If you opt in to text message contact, your phone number will be visible to members who wish to reach you.

You can view and update your personal information at any time through your Profile page.

You can change your contact preferences whenever you wish — simply uncheck the options in your profile.

You can request that your account and all associated data be deleted by contacting our administrators through the Contact Us page.

You can withdraw your map viewer access request at any time.

Your member profile remains in our database as long as your account is active.

If you request account deletion, your personal information will be removed from the system.

In memory of members who have passed, their profile may remain on the map at the discretion of administrators and family, in accordance with their member status.