LymeDisease.org invited to attend White House for Precision Medicine Summit
Los Angeles, February 23 — 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.
Johnson, whose organization recently launched MyLymeData, the first patient-powered research project for chronic Lyme disease, will join government officials, academia, researchers, and other patient advocacy groups to discuss new and emerging approaches being taken to advance precision medicine and improve patient care.
“I am honored that the Lyme disease community has been invited to participate in this important event. Precision medicine is the pathway to the future of medicine for Lyme disease because it looks at the different factors that affect individual treatment response,” says Johnson. “Lyme disease is a complex illness that may involve multiple pathogens. Optimal treatment depends on identifying which pathogens an individual patient has been infected with.”
In January 2015, President Obama launched the Precision Medicine Initiative aimed at accelerating biomedical discoveries to improve health care with targeted diagnostic, prevention and treatment strategies. Precision medicine can provide clinicians with the information needed to tailor therapies to an individual’s unique characteristics. It is a revolutionary way of doing medicine – one that moves away from the ‘one-size-fits-all’ approach.
“MyLymeData is all about precision medicine and big data. We are at the forefront of disruptive innovation that is key to providing Lyme patients the care they need. Thousands of patients have already enrolled in MyLymeData. With enough data, we will have better insight into the disease and be able to identify effective therapies,” says Johnson.
Founded in 1989, LymeDisease.org advocates nationally for high-quality, accessible health care for patients with Lyme and other tick-borne diseases. The organization is committed to shaping health policy through advocacy, legal and ethical analysis, education, physician training, and medical research. LymeDisease.org’s mission is to prevent Lyme disease, prevent early Lyme disease from becoming chronic, and obtain access to care for patients with chronic Lyme disease. More information is available at https://www.lymedisease.org.
MyLymeData is the first national patient-powered research project for chronic Lyme disease. It was conceived by patients, is run by patients, and addresses the issues that patients care about. Through a secure online portal, patients can share health information and experiences living with the disease that can help drive research to improve their lives. MyLymeData will allow researchers to better understand the progression of the disease, what treatments are most effective and why some people stay sick, while others do not. To enroll or learn more about MyLymeData, visit https://www.lymedisease.org/mylymedata.