Our patient-powered research project, MyLymeData, is the largest study ever conducted on Lyme disease. More than 6,500 people are enrolled so far, and our goal is to reach 10,000. 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. Why do some patients get better while others remain ill?
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, and Facebook we provide essential information for patients, families, researchers, and doctors. And, our journal, the Lyme Times is now digital, providing easier access to our extensive archives.
We challenge the Infectious Diseases Society of America and other groups that deny treatment to Lyme patients. We hold public policy makers accountable and promote patient-centered legislation. When beneficial Lyme language was removed from the 21st Century Cures Act, we worked to get the language restored before the bill went to the Senate. Maintaining a national network of online state-based advocacy groups and using online tools, like VoterVoice, we fuel state and nationwide efforts to help Lyme patients obtain access to the care they need.
Our Symptom Checklist asks patients about exposure and symptoms to help determine their risk of having Lyme disease. It can be easily printed out to share with healthcare providers to inform diagnosis. Over 80,000 people have used this tool to assist them in obtaining early diagnosis. Our published surveys of over 4,000 people show that most patients go two years or more before they are properly diagnosed.