’s Press Room

Welcome to’s Press Room. leaders are expert sources for commentary on Lyme and related tick-borne illnesses and are available to the media for interviews. Below find information you might find helpful from basics to previous videos interviews to recent news and press releases.


Founded in 1989,, the leading research advocacy organization for Lyme disease, advocates nationally for quality accessible healthcare for patients with Lyme and other tick-borne diseases. We are committed to shaping health policy through advocacy, legal and ethical analysis, education, physician training and medical research. learn more →

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Top 10 Lyme Disease Research Questions

Number one research priority for Lyme disease? Better testing. releases “Top 10 Lyme Disease Research Questions,” as federal government weighs options in fight against growing epidemic.

The nation’s top research priority for Lyme disease should be finding a more accurate and sensitive diagnostic test. That’s the conclusion of a broad-based collaboration of researchers, treating physicians, and Lyme disease patients in the United States, who took part in a comprehensive priority-setting process over the past two years.

Release of “The Top 10 Research Priorities” comes as the US Department of Health and Human Services (HHS) has recently named a new federal advisory panel for tick-borne diseases. It’s first meeting will be in Washington DC on December 11. Read More

National Science Foundation Grant Supports MyLymeData Research

National Science Foundation Grant Supports MyLymeData Research

The National Science Foundation (NSF) has awarded a three-year, $800,000 grant to explore predictive analytic techniques using data collected by the MyLymeData patient registry. Researchers at the University of California Los Angeles (UCLA) and Claremont McKenna College will collaborate with on the big data project. Read More

Big Data and Precision Medicine are Helping Identify Patients who Improve with Lyme Disease Treatment

Big Data and Precision Medicine are Helping Identify Patients who Improve with Lyme Disease Treatment

A new study suggests that developing effective treatments for Lyme disease may depend on understanding which patients respond to different treatments. Data collected from over 3,400 patients through’s MyLymeData online patient registry suggest that big data analysis techniques can identify subgroups of patients that respond well to treatment. Some chronic Lyme disease treatment studies done in the past have failed to identify treatment successes, but relied on samples of patients too small (37-129 patients) for subgroup analysis. Read More

Early diagnosis of Lyme disease is essential; better treatments still needed

Although an early diagnosis of Lyme disease can improve the chance of recovery for patients, it doesn’t necessarily mean they are out of the woods. MyLymeData, the largest study of Lyme disease using real-world data, has released preliminary findings of its initial survey of more than 4,000 patients. The results presented at the Columbia University/Lyme Disease Association conference in Minnesota are concerning. Read More launches interactive Lyme Disease Symptom Checklist

Think you may have been bitten by a tick? Not sure if you have Lyme disease? A new online symptom checklist tool, developed by, one of the largest patient advocacy organizations, may help in determining the likelihood that you’ve contracted the illness. Read More invited to attend White House for Precision Medicine Summit, the leading research advocacy organization for Lyme disease, announced today that Lorraine Johnson, chief executive officer, has been invited by the White House to participate in the upcoming Precision Medicine Initiative Summit on Thursday, February 25, in Washington, DC. Read More

Big data and patient-powered research aim to solve complex diseases

Lorraine Johnson, CEO of, will join representatives from the White House Office of Science and Technology and Johns Hopkins Medicine at the annual meeting of the American Association for the Advancement of Science (AAAS) on February 13 in Washington, DC. They will discuss the tremendous promise big data holds for solving complex illnesses like Lyme disease. Johnson’s talk, Big Data and Patient Powered Research, will explain why patient-centered big data may be a game changer for chronic Lyme disease. Read More launches MyLymeData − the first patient-powered research project aimed at improving care for Lyme disease patients, one of the largest non-profit Lyme disease patient advocacy organizations in the world, today announced the launch of MyLymeData, the first-of-its-kind national patient-powered research project aimed at improving the quality of care for Lyme disease patients. Read More’s Lorraine Johnson tapped to participate in “citizen science” forum at the White House CEO Lorraine Johnson has been selected to participate in a White House forum hosted by the White House Office of Science and Technology Policy and Domestic Policy Council, “Open Science and Innovation: Of the People, By the People, For the People,” which will be live-webcast on Wednesday, September 30th. Read More

Open Science and Innovation: Of the People, By the People, For the People

US government’s National Guideline Clearinghouse posts first Lyme disease treatment guidelines to comply with Institute of Medicine standards

Lyme treatment guidelines developed by the International Lyme and Associated Diseases Society (ILADS) were posted today on the National Guideline Clearinghouse (NGC). They are the first Lyme guidelines which comply with the Institute of Medicine’s new standards for rigorous evidence assessment and patient engagement in the development process. Read More