PatientsLikeMe started with one patient, and one family's experience with a life-changing condition. When Stephen Heywood was diagnosed with ALS in 1998 at the age of 29, his brothers Jamie and Ben got to work, trying anything they could to slow Stephen's disease progression. They became citizen scientists, harnessing the power of any and all information they could find. It was a trial and error approach, something was missing, and they knew there had to be a better way. What couldn't they find? The aggregated real-world experiences of others living with and fighting to survive ALS.

So, along with family friend Jeff Cole, they launched PatientsLikeMe to connect ALS patients. But it quickly expanded, and since 2011, we have been welcoming any person living with any condition to connect with others, learn and take control of their health.

Today, PatientsLikeMe is the world’s largest personalized health network. 650,000+ people living with 2,900 conditions have generated more than 43 million data points, creating an unprecedented source of real-world evidence and opportunities for continuous learning. Everything members have shared empowers the community with personal agency, establishing PatientsLikeMe as a clinically robust resource that has published more than 100 research studies.

In 2016, honoring the trust our members have placed in us, PatientsLikeMe began connecting patient-reported information with biological data to find new clues about what makes us sick or healthy, and what it means to thrive. With an investment by iCarbonX in 2017 we were able to accelerate this work through our DigitalMe Ignite study.