About PatientsLikeMe

PatientsLikeMe was born out of frustration. When Stephen Heywood was diagnosed with ALS in 1998 at the age of 29, his brothers Jamie and Ben tried to treat his symptoms and slow his disease as it progressed. But finding information to guide their decisions was time-consuming and difficult.

The Heywood brothers: Jamie, Ben and Stephen, who was diagnosed with ALS at the age of 29

Jamie and Ben, along with family friend Jeff Cole, initially launched PatientsLikeMe in 2006 to connect ALS patients, but it quickly expanded, and in 2011, they opened the website to all patients and all conditions. Today, 600,000 people use PatientsLikeMe to report on their experience with 2,800 conditions. It's a place where members can find answers to the same questions Stephen had: "Is what I'm experiencing normal?" "Is there is anyone out there like me?" They can share about their condition in their own voice. And they can learn, connect with others, and track their progress, symptoms and treatments.

Partnering with empowered patients to drive patient centered care

PatientsLikeMe members have fundamentally transformed the world's understanding of disease, generating more than 43 million data points about disease and creating one of the largest repositories of patient-reported, cross-condition data available today. People have come together on our platform to share information and change lives. Now, together, we’ll do even more.

Our goal is to look below the surface, to see what’s going on inside the body, where disease resides. We’ll use technologies that measure where people are today, combine these with information about their experience over time, and apply advanced mathematical techniques to expand our knowledge of biology and disease. We’ll create the learning system that helps everyone find a clearer path forward to health.