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 integrated community, health management, and real-world data platform. Through PatientsLikeMe, a growing community of more than 830,000 people with over 2,900 conditions share personal stories and information about their health, symptoms, and treatments, with a goal to improve the lives of all patients through knowledge derived from shared real-world experiences and outcomes. Data generated by patients themselves are systemically collected and quantified while also providing an environment for peer support and learning. These data capture the complex temporality and competing influences of different lifestyle choices, socio-demographics, conditions, and treatments on a person’s health. Everything members share empowers the community with personal agency, establishing PLM as a clinically robust resource with demonstrated impact, including more than 100 studies in peer-reviewed medical and scientific journals.

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.