About
LymeDisease.org is a non-profit corporation that is a central voice for Lyme patients across the nation through advocacy, education and research. Since 1989, LymeDisease.org (formerly CALDA) has been revolutionizing the Lyme disease arena in public policy, advocacy, and science. Our grassroots membership and state based on line network reach thousands, providing a powerful voice for patients across the country. We seek the hard truths, ask the tough questions, and are not afraid to rock the boat.
We believe Lyme patients must have access to quality care and research that matters to patients must be funded. We believe patients must have a voice whenever policymakers make decisions about Lyme disease. We believe that patients have the right to be shown respect and that those involved in their healthcare should be accountable. Patients must also have the right to make choices about their doctors and their treatment options. They must be given the information necessary to make informed choices. We believe these issues are urgent. We will lead the charge to challenge the status quo and hold public officials accountable as we shine a public spotlight on controversy.
One of our key goals is patient involvement at all levels of decision making, from research project selection to guideline development and, ultimately, to individual treatment decisions. We advocate for patient voices to be heard in health policy-making circles and at the physician’s office. We encourage all concerned with Lyme disease to become advocates for change—to improve the plight of the Lyme patient by increasing public awareness and pressing for legislative research solutions.
We accomplish our goals through grass roots donations, keeping administrative costs low.
LymeDisease.org Has Three Primary Goals:
Advocacy. We seek to increase patient access to care and influence public policy in order to improve the quality of life for those with Lyme disease. We seek to increase patient participation in all aspects of healthcare policy-making by promoting meaningful direct involvement in research grant selection and guideline development. We advocate for legislation to protect physicians who treat Lyme patients and to secure healthcare coverage for patients. We educate and empower patients to take effective political action in their communities.
Education. We educate patients, physicians, and policymakers through the internet, social media, and our quarterly journal, The Lyme Times. We also help inform the medical community and policymakers through medical journal publication (our board members have over 30 publications) and our community physician training grants. That Project Censored has designated Lyme disease as one of the top 25 most censored areas in the media underscores the importance of our efforts.
Research. We fund research critical to improving patient diagnosis and treatment outcomes at major universities such as Stanford, Johns Hopkins, Stony Brook University, University of California at Davis, and the University of New Haven in Connecticut. We also have launched a patient-participatory research program to help bridge the gap between researchers and patients. Ultimately, we wish to create a "fast track" patient survey loop that can be used to evaluate problems researchers need to address (hypothesis generation) and validate or counter studies by researchers with small sample sizes and research samples not reflective of the patient community.
Major Accomplishments:
- Developed a nationwide network of grassroots activists and support groups to provide voice to patients through a state-based on-line community. Assisted groups nationwide and worldwide to strengthen their ability to speak out about political, scientific, legal and health care issues;
- Publish the only national print journal dedicated to issues related to Lyme disease;
- Played the lead role in conceiving and coordinating with the Connecticut Attorney General an antitrust investigation into the development process of the treatment guidelines of the Infectious Disease Society of America (IDSA). That investigation found that the IDSA Lyme guidelines panel had substantial conflicts of interest and used a deeply flawed process to develop its guidelines. The findings of the investigation have been cited in a number of medical journals as well as by the Institute of Medicine in its report on creating trustworthy guidelines;
- Conducted the largest Lyme patient survey to date with over 4,000 responses on the critical issues of access to care and burden of illness. The results of this survey were published in 2011 in a highly regarded peer-reviewed journal, Health Policy;
- Published over 30 peer-reviewed publications addressing scientific and ethical issues in Lyme disease geared toward separating science from fiction;
- Took the lead in defining patient involvement in evidence-based medicine for Lyme disease, reflecting not only the best available evidence, but also the clinical judgment of physicians and the preferences of patients. LymeDisease.org is allied with patient-oriented evidence-based healthcare groups. Our CEO is on the steering committee of one of the most prominent groups in the nation, Consumers United for Evidence-Based Healthcare, and is a member of and has presented at the Cochrane Collaboration Consumer Network on the role of consumers in evidence-based healthcare;
- Funded critical research at such institutions as Stanford, University of New Haven in Connecticut, Johns Hopkins, and Stony Brook University;
- Developed The Two Standards of Care policy to increase and empower patient choice and access to care. We have expanded the program to include Two Standards of Care for Children and Two Standards of Care for Medical Boards;
- Created a community participation research program driven by patient surveys. Our current survey is on patient preferences in making medical decisions regarding their treatment. Our next survey will focus on the prevalence of patient symptoms. Each of our surveys has drawn over 4,000 participants. Our survey populations are large and clinically relevant, while NIH funded studies involve small populations that are not typical of those seen in clinical practice. The survey project creates a dialogue between the research community and the patient community; and
- Advocated with the medical societies that create treatment guidelines for Lyme disease to ensure that the patient voice is included.
