LymeX will accelerate Lyme Innovation progress and strategically advance tick-borne-disease solutions in direct collaboration with Lyme patients, patient advocates, and diverse stakeholders across academia, nonprofits, industry, and government.
Lyme disease is easily prevented and accurately diagnosed at all stages of the disease with effective treatments that all Americans can afford.
Respect: Everyone is valued.
Innovation: Shifting paradigms. Finding a better way.
Honesty/Integrity: Find the truth. Tell the truth.
Excellence: Quality, real-world evidence underlies decision-making.
Compassion: Finding solutions to relieve suffering.
Collaboration: Citizens and patients are equal partners.
Accountability: The buck stops here.
LymeX’s success story continues to unfold. Read on to see how our activities are making a positive real-world impact on Lyme disease and other tick-borne illnesses.
Community-Led Lyme Innovation (2015-2018)
Bottom-up community launches “Lyme Innovation”. Patients, entrepreneurs, non-profit leaders, and academics organized a series of Lyme Innovation hackathons and events. These bottom-up efforts created new momentum while welcoming all stakeholders. Patients and practitioners worked side-by-side to accelerate innovation in Lyme disease diagnostics, treatment, and information sharing across top-tier universities using open data, open science, open innovation, and open source code.
Lyme Innovation inspires Congressional action. The 21st Century Cures Act authorized the Tick-Borne Disease Working Group (TBDWG) within HHS.
TBDWG established. For the first time, the TBDWG brought together federal and public members to review government efforts and scientific research to make shared recommendations on advancing the field.
TBDWG delivers. TBDWG produced its first report with 28 recommendations to the U.S. Congress and HHS Secretary in 2018.
HHS Launches Lyme Innovation (2018-2020)
HHS launches its Lyme Innovation initiative. The Federal government and HHS announced the new initiative to connect the bottom-up community needs and momentum with top-down, federal priorities and resources in response to the 2018 TBDWG report.
HHS hosts the Lyme Innovation Roundtable. To facilitate information-sharing and feedback from stakeholders including patients, advocates, providers, clinicians, researchers, and policy makers, HHS conducted a Lyme Innovation Roundtable and published a summary report with actionable recommendations for the Lyme disease community.
HHS takes part in U.S. Census Bureau’s TOP Health tech sprint. The TOP Health tech sprint gave participants 14 weeks to tackle health-related challenges including “How can we address Lyme and other tick-borne diseases through emerging technologies by coupling the power of the crowd and patient insights with data?” The sprint resulted in these tangible innovations: CURA Patient, Lyme Symptom Tracker app, TickTickBOOM!, and the TickTracker app.
LymeX Partnership Launches (2020-Present)
LymeX announcement at LymeMIND Conference. HHS and the Steven & Alexandra Cohen Foundation announce the formation of LymeX, the world’s largest Lyme disease public-private partnership.
LymeX launches the Health+ Lyme Disease cycle. Starting from the viewpoint of patient-centered innovation, the LymeX Health+ (“health plus”) team completed almost 700 hours of interviews, listening sessions, and workshops.
LymeX releases Request for Information (RFI). LymeX released an RFI to understand the current landscape and emerging technologies to improve Lyme disease diagnostics, receiving 32 responses from the public on how research and investments in rapidly developed COVID-19 diagnostics might be adapted or repurposed for Lyme and tick-borne diseases.
LymeX hosts Bridging the Gap Roundtable. More than 1,500 viewers watched the LymeX Roundtable: Bridging the Trust Gap featuring inclusive strategies and emerging technologies for tick-borne diseases. Afterward, approximately 70 participants — including patients, doctors, researchers, and policymakers — explored ways to improve cooperation and communication with a resulting report.
LymeX Education and Awareness “Healthathon.” The Healthathon (similar to a hackathon, but as a health-focused sprint) called on the public to create educational materials to raise awareness about tick-borne disease prevention and help others benefit from the latest scientific findings. Participants from all walks of life, including two winning K-12 innovators, helped lead by example with Lyme Innovation progress. The LymeX Education and Awareness Healthathon resulted in five winners, including two K-12 innovators, whose work was socialized on YouTube and in social media.
LymeX Research Workshop: Advancing Research for Lyme and Tickborne Diseases. Building upon the LymeX Roundtable, this workshop invited 50 participants, including 17 Lyme patients and advocates, to share input on patient-driven research.
LymeX announces partnerships with NASA Center of Excellence for Collaborative Innovation (CoECI) and the Defense Advanced Research Projects Agency. Partnerships with these two agencies represent a multidisciplinary effort to address the complex challenges presented by Lyme disease. The LymeX and NASA CoECI collaboration’s goal is to accelerate the development of Lyme disease diagnostic tests. The DARPA collaboration is related to early-detection methods that improve the federal response to infectious diseases.
LymeX makes prelaunch announcement of the LymeX Diagnostics Prize. An optional Letters of Intent period for interested parties launched on challenge.gov.
AcademyHealth includes Lyme disease in the 2022 Health Equity DataJam. AcademyHealth’s public call for members of the public with data skills to help address pressing health issues includes a track on health equity and Lyme disease.