LymeDisease.org’s Who We Are

Founded in 1989 as a small grassroots organization in Ukiah, California, LymeDisease.org has grown into one of the most trusted sources of information for Lyme patients. Today, our website reaches millions of people around the globe each year.

We are grounded in the principles of patient empowerment, participation, and self-determination. Our mission is to strengthen the patient voice in order to:

• support science-based advocacy
• drive legislative change
• create a future where Lyme patients can access the treatments they need to get well

LymeDisease.org empowers patients by educating them, amplifying their collective voice, and providing research tools such as the MyLymeData patient registry. We believe deeply in the power of patients working together.

MyLymeData: Patient-Driven Research

MyLymeData is a patient-driven registry and research platform that allows patients to quickly and privately pool their data. Enrolling thousands of patients permits researchers to evaluate care as it is provided in real world practice. It can also generate research hypotheses and help recruit patients for clinical trials.

Empowering Patients

A core part of our mission is ensuring that patients are involved at every level of decision making—from research priorities to guideline development to individual treatment choices. We work to ensure that the patient voice is not only heard, but valued as an essential part of improving Lyme disease care and outcomes.

We believe:

These issues are urgent. We challenge the status quo and hold public officials accountable as we shine a public spotlight on controversy.