About Tick Bite Data
Turning Patient Experiences into Meaningful Data
Tick Bite Data is a nonprofit organization dedicated to advancing the understanding of tick bites, Alpha-gal Syndrome (AGS), and other tick-borne illnesses through patient-reported data.
Our mission is simple: to give patients a voice by transforming individual experiences into meaningful information that can support research, improve public awareness, and inform future public health discussions.
Tick-borne illnesses affect thousands of individuals and families each year, yet many questions remain unanswered. Patients often experience delayed diagnoses, inconsistent medical experiences, and symptoms that extend far beyond what is commonly recognized. By collecting information directly from those living with these conditions, Tick Bite Data works to identify emerging trends, generate new research questions, and highlight the real-world impact of tick-borne disease.
What We Do
Tick Bite Data develops and maintains patient surveys designed to better understand:
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Tick exposure and geographic trends
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Alpha-gal Syndrome (AGS)
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Lyme disease and other tick-borne illnesses
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Symptoms and disease burden
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Quality of life
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Diagnostic experiences
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Occupational and financial impacts
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Public health and prevention opportunities
Our analyses are based on patient-reported information and are intended to complement—not replace—clinical research. We believe patient experiences are an essential part of understanding diseases that continue to evolve.
Our Commitment
Tick Bite Data is committed to producing information that is accurate, transparent, and responsibly presented.
We strive to:
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Present findings objectively.
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Clearly distinguish patient-reported observations from established scientific evidence.
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Encourage collaboration with researchers, healthcare professionals, public health agencies, and community organizations.
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Support education through data rather than speculation.
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Maintain the privacy and trust of those who contribute their experiences.
Why Patient Data Matters
Every survey response represents a person, a family, and a unique experience.
While one story can raise an important question, thousands of experiences can reveal patterns that deserve further investigation. By collecting patient-reported data from diverse communities, Tick Bite Data helps identify trends that may inform future scientific research, healthcare education, and public health initiatives.
A Collaborative Approach
Tick Bite Data welcomes opportunities to collaborate with universities, healthcare organizations, nonprofit partners, community groups, journalists, and public health professionals interested in advancing knowledge of tick-borne illnesses.
We believe meaningful progress happens through collaboration, transparency, and a shared commitment to improving the lives of those affected.
Our Nonprofit Mission
As a nonprofit organization, Tick Bite Data is committed to serving the public through education, research support, and community engagement. Our work is guided by the belief that better data leads to better questions, better awareness, and ultimately better outcomes for patients.
Join the Initiative
Whether you are living with a tick-borne illness, caring for a loved one, conducting research, practicing medicine, or simply interested in learning more, your participation matters.
Together, we can transform patient experiences into meaningful data that advances awareness, informs research, and supports a better understanding of tick-borne illnesses.