is the Chief Executive Officer of LymeDisease.org. She is an attorney advocate on issues related to the medico-legal and ethical aspects of Lyme disease and has published over 40 peer-reviewed articles on this topic. She co-authored the Lyme disease guidelines of the International Lyme and Associated Diseases Society, published in 2014. She serves as a patient representative of the Patient Engagement Advisory Panel for the Patient Centered Outcomes Research Institute (PCORI) and sits on both the Executive and Steering committees of PCORnet, a national patient-centered big-data project. She chairs PCORnet’s Patient Council. In addition, she is co-chair of the steering committee of Consumers United for Evidence-Based Healthcare, a nationwide coalition of consumer groups associated with the international Cochrane Collaboration and serves as a consumer peer reviewer for Cochrane evidence-based protocols and reviews. She has spoken before state legislatures, US and international governmental agencies, and at healthcare policy conferences throughout the world. Her blog focuses on medico-legal ethics and healthcare policy issues related to Lyme disease. Publications on Google Scholar; Publications on PubMed
LymeDisease.org is a non-profit
501(c)(3) that serves the patient community through advocacy, education and research.