Dynamic Online Community and Resources for Patients with Rare Diseases

An Empowered Patient Podcast at Medical and Pharma Insider hosted by Karen Jagoda


Dr. Kate Burke is Senior Medical Advisor at PatientsLikeMe and Jed is a patient leader, advocate and patient with a range of conditions including ankylosing spondylitis (AS) and Lyme disease. They join Karen Jagoda on the podcast to talk about the robust online community PatientsLikeMe and how it helps patients with rare diseases take charge of their health and helps life science organizations better understand patient needs.


By integrating medical data from a variety of sources, the site helps patients share that data with their care team and make more informed healthcare choices. The community also encourages connections amongst those suffering from the same rare disease and facilitates participation in virtual or semi-virtual clinical trials.


COVID-19 forced a re-evaluation of the power of online access for this community. Many of the barriers for participating in live group activities have been removed by going online and both Kate and Jed agree the changes are here to stay.


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PatientsLikeMe Website