Empowering Patients through Research Advocacy
LDo funds research that matters to patients. Our research committee includes scientists, physicians and patients working together to determine and fund patient centered research. LDo has funded research at Stanford, the University of Connecticut at New Haven, Stony Brook, and Johns Hopkins.
Over 10 years ago, we started collecting and publishing patient data through surveys of thousands of patients. Today, our big data project, MyLymeData, is the largest study of Lyme disease ever conducted–with over 12,000 people enrolled so far – our goal is to reach 15,000. In the comfort of their homes, patients input their experiences with diagnosis, symptoms, and treatment to help researchers gain a better understanding of the disease.
The National Science Foundation has granted $800,000 to academic researchers at UCLA and Claremont McKenna to explore big data techniques using data from the MyLymeData registry. In addition, MyLymeData is now collaborating on a tissue-collection project with the leading source for research tissues in the nation, the National Disease Research Interchange and the Bay Area Lyme Foundation. These are essential steps in building a collaborative research engine designed to realize the promise of big data and accelerate research in Lyme disease.
The ultimate goal of MyLymeData is to improve healthcare for all people with Lyme disease.
Keeping the Lyme Community Informed
LymeDisease.org is the most trusted source of information, news, and healthcare policy analysis related to tick-borne diseases. We are the largest communications network concerning Lyme disease. Through our website, blogs, Twitter, weekly newsletter and Facebook we provide essential information for patients, families, researchers, and doctors. Members of LymeDisease.org enjoy exclusive access to online issues of The Lyme Times, one of the most respected publications in the industry covering Lyme and other tick-borne diseases.
Members also have access to a a comprehensive database of resources covering insurance and disability, treatment guidelines, healthcare policy, and links to helpful organizations, support groups and publications as well as exclusive access to a select group of educational videos featuring physicians who specialize in Lyme and associated tick-borne diseases.
Additionally, we maintain a national network of online state-based advocacy groups to fuel state and nationwide efforts to help Lyme patients obtain access to the care they need.