Chief Executive Officer, LymeDisease.org
Represented: Patients, Caregivers, and Patient Advocates
Lorraine Johnson is the Chief Executive Officer of LymeDisease.org, a non-profit that advocates, informs, and funds research related to Lyme disease. She is also a director and an officer of the International Lyme and Associated Diseases Society. She is the Co-Chair of the steering committee of Consumers United for Evidence-Based Healthcare (CUE), a national coalition of approximately 40 consumer advocacy organizations that seeks to improve the consumers’ ability to engage in and demand high quality healthcare. She is a consumer peer reviewer for Cochrane Collaboration evidence-based reviews. For the past ten years, she has focused on the medical, legal and ethical aspects of evidence-based healthcare in the context of Lyme disease and has over 40 publications in peer reviewed literature related to this topic. She has spoken at universities, at governmental hearings, before medical societies, and before the consumers group at the Cochrane Colloquium.
Johnson served as a member of the Advisory Panel on Patient Engagement from April 2014 - April 2017.
Conflict of Interest Disclosures
As of November 4, 2016:
- LymeDisease.org, CEO, Self