About PA Lyme

The Largest 501c3 Non-Profit State Organization …
Advocating for Lyme Patient Rights

PA Lyme Resource Network is an all-volunteer organization dedicated to reducing the suffering and impact of Lyme and other tick-borne diseases in Pennsylvania. We do this through prevention awareness, early symptom recognition, access to Lyme-literate medical professionals, and speedier, more accurate diagnosis and treatment. As a “Resource Network,” PA Lyme provides a variety of programming for many audiences.

Meaningful, statewide education, awareness, and assistance to the following: 

  • Local Communities 

  • High Risk Groups 

  • Lyme Patients and their Families  

  • Parents, Teachers, and School Nurses  

  • 20 Regional Support Groups

  • Greater Healthcare Community

Programming and events, including:  

  • Medical conferences partnering with ILADS  

  • Statewide patient education conferences  

  • DARE prevention education programs  

  • Lyme awareness events  

  • Referrals to Lyme Literate Healthcare Practitioners  

  • Lyme legislation awareness and advocacy

Group of people at a PA Lyme Resource Network booth outdoors, with a woman handing a ticket to a man, under a canopy with event signage and a table with ticket prices.

  • PA Lyme was founded in 2012 by individuals compelled by personal experiences to help others affected by Lyme and Tick-borne diseases (Lyme/TBD). The founders and/or their children have Lyme/TBDs. Each of the early founders started or actively supported a local Lyme support group. The “Lyme Journey” is often traumatic, not just because of the illness, but also the fear, uncertainty, frustration, anger, and financial hardship that often comes with it. The founders formed PA Lyme to help others navigate this exceedingly complex and controversial disease. 

  • EDUCATION 

    PA Lyme’s DARE 2B Tick Aware program has provided hundreds of tick prevention seminars, educating thousands of Pennsylvanians. PA Lyme continues to host statewide patient conferences and medical conferences to educate patients and healthcare providers on the latest information about Lyme and tick-borne diseases. PA Lyme also provides prevention and educational materials at awareness events throughout the state. PA Lyme also hosts the monthly Virtual Lyme Impact Series, featuring national Lyme and TBD experts. 

    SUPPORT  

    PA Lyme hosts 20 support groups across the state.  Regional leaders provide support, information and knowledge about local resources. 

    LEGISLATIVE  

    PA Lyme has its roots with LymeActionPA, and a shared legislative focus to address the Lyme epidemic in PA.  This grass roots effort resulted in the 2014 passage of Act 83, The Lyme and Related Tick-borne Disease Surveillance, Education, Prevention, and Treatment Act.  Other legislative victories include ACT 120, The Lyme Disease Education of Parents, and Establishing Protocols for Tick Bites in Schools. 

  • For 10 of the past 13 years, Pennsylvania has been #1 in the U.S. in reported cases of Lyme disease and has accounted for 22.4% of all Lyme disease cases in the United States over the past decade. The PA Dept. of Environmental Protection reports that Lyme/TBDs are in all 67 counties in Pennsylvania. According to the PA Dept of Health, for several years approximately 100,000 Pennsylvanians got Lyme disease per year, 25% of which were children ages 5-14, resulting in 68 children per day. Unfortunately, upwards of 10-20% of these children and anyone with Lyme go on to experience long-term symptoms. The need for PA Lyme’s mission of Lyme prevention, support, education, and patient advocacy has never been more critical.

We have built a compassionate, supportive organization and always welcome additional volunteers, legislative advocates and donors to continue our mission of making a difference.