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LymeDisease.org’s Press Room

Welcome to LymeDisease.org’s Press Room. LymeDisease.org 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.

About LymeDisease.org

Founded in 1989, LymeDisease.org, 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 →

Media Contact

LymeDisease.org
PO Box 1352
Chico, CA 95927
media@lymedisease.org

Press Releases

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 LymeDisease.org 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 LymeDisease.org’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

LymeDisease.org 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 LymeDisease.org, one of the largest patient advocacy organizations, may help in determining the likelihood that you’ve contracted the illness. Read More

LymeDisease.org invited to attend White House for Precision Medicine Summit

LymeDisease.org, 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 LymeDisease.org, 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

LymeDisease.org launches MyLymeData − the first patient-powered research project aimed at improving care for Lyme disease patients

LymeDisease.org, 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

LymeDisease.org’s Lorraine Johnson tapped to participate in “citizen science” forum at the White House

LymeDisease.org 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

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