Lorraine Johnson is the CEO of LymeDisease.org, a non-profit organization, which advances patient interests and is the leading communications hub for Lyme disease. She is also the principal investigator for the MyLymeData patient registry, which has enrolled over 18,000 patients. Her background includes a JD|MBA and a personal battle with persistent Lyme disease.
In collaboration with academic researchers and clinicians, she has published six registry-based studies and over 50 other peer-reviewed publications focused on Lyme disease. She is a recognized authority on Lyme disease, patient registries, and patient-centered research. She served on the federal Tick-Borne Diseases Working Group subcommittees. Recently, she served on the planning committee for the NASEM workshop on Infection-Associated Chronic Conditions.
Lorraine’s public healthcare policy involvement includes being a member of the Patient Centered Outcomes Research Institute’s Executive Committee big data initiative involving 23 patient registries as well as serving as a member of the Consumers United for Evidence-Based Medicine Steering Committee (the US branch of the Cochrane Collaboration). Her insights have been shared at national and international conferences, including the Cochrane Colloquium, the American Association for the Advancement of Science, the NIH, the NIH Collaboratory, and the NASEM Workshop on Infection-Associated Chronic Conditions.