LymeDisease.org is proud to announce a major milestone: MyLymeData now has more than 20,000 participants.

This achievement strengthens what was already true—MyLymeData is one of the largest patient driven Lyme disease studies in the world.

Here’s why surpassing 20,000 participants is a significant accomplishment for the whole Lyme community.

1. It gives patients a seat at the table

For decades, Lyme patients have been underrepresented—or entirely absent—from traditional research. MyLymeData acts to change that by allowing patients to share their lived experiences directly, reporting symptoms, treatments, and outcomes in a way that reflects the real world complexity of Lyme disease.

With more than 20,000 participants, the collective patient voice has become a powerful source of evidence—one that researchers and policymakers can no longer overlook.

2. It enables research that traditional studies can’t do

Most Lyme studies are small, short term, and exclude the very patients who are most affected—those with persistent or chronic symptoms.

By contrast, a dataset of MyLymeData’s size allows scientists to identify patterns across thousands of patients, study long term outcomes, compare treatment approaches, and examine subgroups that would be impossible to analyze in smaller studies. This kind of large scale, real world evidence is essential for understanding a disease as complex and variable as Lyme.

3. It strengthens the power of real-world evidence

Because participants regularly update their information, MyLymeData can track how symptoms evolve, which treatments patients are using, and how quality of life changes over time. Crossing the 20,000 participant threshold increases the statistical power of these insights, making it easier to detect meaningful trends and understand what is helping patients—and what isn’t.

The result is a clearer, more accurate picture of what Lyme patients experience.

4. It drives policy and advocacy

Data from MyLymeData has already informed federal advisory committees, supported legislative efforts, and highlighted critical gaps in care. As the dataset grows, so does its influence.

As Amanda Elam, Co‑Founder of Galaxy Diagnostics, noted: “The MyLymeData project has been one of the most important and impactful advocacy initiatives I’ve seen in 15 years.”

Surpassing 20,000 participants strengthens the credibility and impact of the findings, helping ensure that the needs of Lyme patients are represented in national conversations about research, funding, and healthcare policy.

5. It shows the strength of a community that refuses to be invisible

Every person who joins MyLymeData is making a statement: my experience matters, my story matters, and I want to help change the future of Lyme disease. Reaching 20,000 participants demonstrates what can happen when patients come together to build what’s needed for research to go forward.

6. It accelerates the path toward better care

The goal of MyLymeData is simple: to improve the lives of people with Lyme disease. By contributing data, patients help identify promising treatment approaches, highlight unmet medical needs, and guide researchers toward the most urgent questions.

A dataset of this size also lays the groundwork for future clinical trials and more personalized approaches to care. Every new participant strengthens the science and brings us closer to better diagnostics, better treatments, and better outcomes.

Thank you to the 20,000+ patients who made this possible

This milestone belongs to the Lyme community. We are grateful to every participant who has taken the time to share their experiences. Your contribution is helping to reshape the future of Lyme disease research.

And if you haven’t joined yet, you can still be part of this historic effort. The more data we gather, the more powerful the insights become. Click here to enroll.

Download a copy of our 10-year anniversary chartbook, which summarizes findings from the first decade of MyLymeData.

Together, we are building the knowledge base that will drive the next generation of Lyme disease research and care.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.