About Our Data

The Global ALS/MND Directory is a map of organizations that help people living with ALS and motor neuron disease — clinics, clinical trials, equipment suppliers, home care and hospice, caregiver support, support groups, research programs, and advocacy organizations. We built it because when a family hears "you have ALS," the help they need exists but is scattered across hundreds of websites in a dozen languages. This page explains exactly what's in the directory, where it came from, and how much you should trust it.

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Every organization was added one of four ways:

1. Researched by hand from public sources — the organization's own website, national ALS/MND association directories (the ALS Association, MND Association, JALSA, MND Australia, and the International Alliance of ALS/MND Associations' member list), clinical-trial registries, and published research.
2. Submitted by the community through the "Who's missing?" button, then reviewed by our team before publishing.
3. Claimed and updated by the organization itself — organizations can claim their listing and correct it.
4. Imported from partner directories in bulk, then de-duplicated and checked.

We record how each listing entered the directory, and we don't publish anything that hasn't been reviewed by a person.

A listing carries a verification level:

• Certified — the organization holds a recognized ALS-specific designation (an ALS Association Certified Treatment Center of Excellence or Recognized Treatment Center, an MND Association Care Centre, a member of the European ENCALS network, or a national association's official program). We didn't decide these are ALS programs; the field's own certifying bodies did.
• Verified by research — we confirmed from the organization's own published materials that it provides the services listed.
• Community submitted — reviewed for legitimacy, but the service details come from the submitter.
• Pending verification — held out of public view until confirmed.

Verified means we confirmed the organization exists and offers what we say it offers, as of the date shown on the listing. It does not mean we've evaluated the quality of care, and a listing is not an endorsement. Please confirm details directly with any organization before you rely on them.

• Coverage is uneven. We have far more clinics than support groups, caregiver services, or equipment programs, especially outside the United States, the United Kingdom, Japan, Australia, and Germany. We're filling those gaps country by country, and we'd rather tell you where we're thin than let the map imply completeness.
• Some countries have very little. Many countries have a single listed organization, and some have none — often because the organizations genuinely don't exist there yet. An empty region on our map is information too.
• We don't hold clinical data. Nothing here tells you about a clinic's staffing, outcomes, or patient volumes. We list what organizations offer; we don't measure how well.
• Things change. Organizations close, move, and change what they do. Every listing shows when it was last verified. If a date is old, treat the details with more caution.

Each organization displays "Information as of [date]" — the last time a person confirmed its details. We're building a re-verification schedule so no listing goes more than a year without review. Until that's complete, the date on the listing is your best guide.

You can fix this directory. If you find an error, a closed organization, or a resource that helped your family and isn't here:

• Use "Who's missing?" on any page to suggest an organization
• Use "Manage this listing" if you represent the organization
• Report a problem on any listing

We review every submission. Most corrections publish within a week.

Browsing, searching, and sharing individual listings is free and open to everyone, always. Bulk downloads are available to registered users (free) so we can understand how the data is being used. If you use our data in research, reporting, or another tool, please credit "The Global ALS/MND Directory, a project of ALS Crowd" and link back. We're working toward a versioned, machine-readable release of the full dataset for researchers.

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The directory is a project of ALS Crowd, a nonprofit founded by Seth Christensen. It's built and maintained by ALS families and volunteers, and funded entirely by donations. We have no advertisers, no sponsors influencing listings, and no paywall.