Compass is still being developed and is effectively in beta. Some content and features may be incomplete, change, or not work as expected.

Content is anchored to trusted sources where available, but Compass has not yet been clinically reviewed. It provides general information rather than medical advice.

Feedback helps us identify gaps, errors, usability problems and opportunities to improve Compass over time.

How Compass is developedGive feedback

PatientsLikeMe

Communities and peer support · By PatientsLikeMe (private company) (opens in a new tab)

A large online community where people with ALS track symptoms, treatments and progression and compare notes. Run by a company that shares data with research partners.

  • Commercial
  • Community run
↗ Open PatientsLikeMe on PatientsLikeMe (private company)’s site (opens in a new tab)

PatientsLikeMe began with ALS and its ALS community remains one of the largest online. Members log symptoms, treatments and functional scores over time and can see aggregated data from others. It is run by a company whose model is sharing de-identified member data with research and commercial partners; that is stated in its terms and is the trade-off for a free, well-built tool.

Who it is for
People with ALS/MND, Carers and family
Where it works
Anywhere
How you reach it
Website
Worth knowing
De-identified member data is shared with research and commercial partners. Read the privacy policy before joining.