LymeDisease.org

Powered By Patients

aka LymeDisease.org   |   San Ramon, CA   |  http://www.lymedisease.org

Mission

LymeDisease.org seeks to make the patient voice stronger, to support patient-centered research, and to create a future where Lyme patients can receive the treatments they need to get well. Its focus is on large scale science-based advocacy, communications and big data research. Founded in 1989, it is one of the oldest, largest, and most trusted sources of patient information on Lyme disease, drawing millions of unique website visitors a year. Its MyLymeData patient registry and research platform has enrolled over 14,000 patients and is among the top 5% of patient-led registries in the nation. Its communications network distributes resources and educates the public about the science of tick-borne diseases via website content, blogs, social media, and an online journal, the Lyme Times

Ruling year info

1996

Chief Executive Officer

Lorraine Johnson JD, MBA

Main address

PO Box 716

San Ramon, CA 94583 USA

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Formerly known as

California Lyme Disease Association (CALDA)

EIN

68-0214101

NTEE code info

Alliance/Advocacy Organizations (E01)

Citizen Participation (W24)

Specifically Named Diseases Research (H80)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Lyme disease is the most common vector-borne disease in the United States with an incidence of over 476,000 cases a year [1]. When treated early and adequately, most patients are restored to health. Even so, treatment failure rates remain unacceptably high, ranging between 10-35% [2]. In addition, many patients are not diagnosed early and experience higher treatment failure rates. Unfortunately, we know very little about how to treat late Lyme disease—no studies have been done, and short term protocols often prove inadequate. When treatments fail, patients may develop persisting debilitating symptoms, a condition commonly referred to as persistent or chronic Lyme disease. The state of the science today does not permit us to adequately characterize persistent Lyme disease, identify the factors that increase the risk of developing it, or determine the optimal treatment approach for different patients using individualized care. Patients with chronic Lyme disease are denied access to th

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

MyLymeData

The problem is chronic Lyme disease

Many patients with Lyme disease remain ill after a short term course of antibiotics and have a quality of life that is equal to that of patients with congestive heart failure. Debate exists about whether these persistent symptoms are caused by on-going infection or an inflammatory response. Treatment is controversial because:
* There is no current Lyme disease test that can determine whether a patient has active infection,
* Insurers are reluctant to cover unproven treatments,
* A major medical society denies the existence of persistent Lyme disease and the need to provide treatment, and
* Physicians who treat Lyme disease are targeted by medical boards.

Why this is important?

Patients with chronic Lyme disease are denied access to the diagnosis, treatment, and insurance coverage they need to become well. Patients are denied treatment options on the basis that evidence of treatment effectiveness has not been demonstrated. However, no research into treatment options for chronic Lyme patients is being conducted. Unless clinically relevant data is developed, patients with chronic Lyme disease will continue to abandoned by the medical system and will not get the care they need to get well.

How we can address this problem?

To solve these issues, we need clinically relevant data. However, Lyme disease is a research disadvantaged disease. Neither the government nor pharmaceutical companies have demonstrated an interest in researching treatments that might restore or improve the quality of life for patients with chronic Lyme disease. The last NIH funded treatment trials was funded over 20 years ago. The three funded before that yielded conflicting results, were too small (just 37 to 129 enrolled) to permit subgroup analysis, and excluded too many patients (over 85% of those who applied) to apply to most patients seen in clinical practice.
In 2015, LymeDisease.org launched MyLymeData to accelerate the pace of research for Lyme disease by generating data and knowledge that leads to actionable insights. The goal is to develop the evidence base required to change health care policy in Lyme disease, increase access to care, and improve the standard of care for treatment.

Population(s) Served
People with diseases and illnesses
Caregivers

We are the largest and most trusted communications network for Lyme disease in the nation. The organization raises the level of public awareness of Lyme disease through our published blogs and the digital Lyme times as well as the internet, and social media.

Through our website, blogs, social media, and weekly online newsletter, we empower and educate patients nationwide. We provide tools to help advocates educate physicians, government officials and patients about Lyme and other tick borne diseases.

Population(s) Served
Adults
People with diseases and illnesses

We conduct and publish research through the largest study of Lyme disease through our patient registry and research platform, MyLymeData, with over 14,000 patients enrolled to date. We collaborate with researchers from the University of Washington and from UCLA, as well as Bay Area Lyme Foundation biobank on a tissue specimen biorepository.

Population(s) Served
People with diseases and illnesses
Caregivers

We strive for patient involvement at all levels of decision making. We represent hundreds of thousands of patients and provide them with the tools essential to empowerment. For over 10 years, we have been involved in patient-led big data research efforts, conducting large scale patient surveys that engage thousands of patients and are published in peer reviewed journals.

We believe:
• Lyme patients must have access to quality medical care.
• Patients have the right to be shown respect and that those involved in their healthcare should be
accountable.
• Patients have the right to make choices about their doctors and their treatment options.
• Patients must be given the information necessary to make informed choices.
• Research that matters to patients must be funded.
• Patients must have a voice whenever policymakers make decisions about Lyme disease.

Population(s) Served
People with diseases and illnesses
Adults

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Founded in 1989, the mission of LymeDisease.org is to harness the power of tens of thousands of patients to improve patient care and to accelerate the pace of Lyme disease research. We do this through large-scale science-based advocacy, communications, and patient-driven big data research.
LymeDisease.org is powered by patients. We believe there is strength in numbers. We represent hundreds of thousands of patients and provide them with the tools essential to empowerment. Educated and informed patients are the key to improving health care outcomes. We provide patients with the information that empowers them to make sure that they receive the care they need.
True power comes from having informed patients involved in all levels of decision making—from education, to legislation, and even science. Together we amplify the patient voice to drive health care policy change.
Through the MyLymeData patient registry, we develop the data necessary to better characterize persistent Lyme disease and to evaluate patient outcomes based on the real world care they receive from their clinicians. To receive the care they need to get well, patients must:
• Receive care that is patient-centered and improves their health,
• Know that there are divergent diagnostic and treatment approaches used by different clinicians,
• Have access to providers that can provide quality medical care,
• Be given the information necessary to make informed choices about diagnosis and treatment (including the risks and benefits of different treatment options), and
• Be afforded the opportunity to make informed treatment choices in consultation with their clinicians based on their individual circumstances and treatment preferences (e.g. shared medical decision-making).
To achieve healthcare policy change through advocacy, patients should be involved at all levels of healthcare policy decision making. This includes having a seat at every forum that discusses Lyme disease (nothing about us without us). Beyond this, patient representation must be authentic, meaningful, and accountable to the community. To influence health care policy reform, patients need the healthcare data essential to better characterize Lyme disease (particularly persistent Lyme disease) and the effectiveness of treatment options and their associated side effects.
Accelerating research that is patient-driven requires that:
• Research be based on clinically relevant research populations and use interventions and research outcomes that patients regard as important,
• Patient-generated data be pooled in a patient registry to better characterize the disease, analyze the risks and benefits of available treatment options, and identify how different subgroups of patients respond to treatment,
• Patients assist researcher recruitment efforts for clinical trials,
• Patient organizations collaborate with other organizations to build out a robust research engine that may include biorepositories, clinicians, industry, and researchers

Our strategies for making this happen include:
• developing and sustaining an extensive and robust communications network for patients and clinicians,
• providing comprehensive and trustworthy information to patients that they need to become diagnosed and treated,
• mobilizing tens of thousands of patients in advocacy and patient-driven research,
• advocating for healthcare policy change that will eliminate access to care barriers that patients face, increase research funding, and promote the use of shared medical decision making, and
• accelerating the pace of research through our patient registry and research platform, MyLymeData.

Communications: LymeDisease.org is the largest and most trusted Lyme disease patient communications network in the nation, drawing millions of visitors to its website annually. Our reach to patients is unparalleled, with widely distributed website content, blogs, social and print media, including our digital publication, The Lyme Times.
New patients rely on us to provide information to get promptly diagnosed, tested, and treated. Patients with chronic Lyme disease rely on us for timely, accurate news and commentary through our website, blogs, newsletters, and our online support and discussion forum: U.S. National Lyme Group.
LymeDisease.org provides patients with the tools to get promptly diagnosed and treated. Our Symptom Checklist helps patients determine whether they have been exposed to Lyme disease and assess whether they should see a healthcare practitioner. Millions of people have used the symptom checklist to help obtain an earlier diagnosis. Our physician referral program gives patients information about local physicians who treat Lyme disease.
Advocacy: Our advocacy efforts benefit from the thousands of patients who lend their voices to promote change. Over 14,000 patients answered our call to contact legislators to pass the 21st Century Cures Act that created the Tick-Borne Disease Working Group, where patients for the first time have a seat at the table and discussions that would have occurred behind closed doors are now public.
Representatives from LymeDisease.org have served on Working Group subcommittees since its inception, drafting portions of the report that goes to Congress, testifying at their hearings, nominating patient representatives who are qualified to serve on the Work Group, and informing the patient community regarding the deliberations and resulting outcomes from this group.
Research: Patients are the most underutilized resource in medical research. MyLymeData is a patient-led research registry that uses innovative technology that by-passes traditional research bottlenecks. It allows patients to pool their data to accelerate research using real world evidence.
The registry uses one of the highest quality and most secure registry platforms – the same one that serves National Institutes of Health patient registries.
MyLymeData seeks to:
• generate actionable data and a knowledge base to improve care and promote policy reform,
• build the Lyme community research capacity,
• foster research partnerships and collaborations with researchers, clinicians, and blood/tissue biobanks,
• identify treatment response subgroups and determine the factors that make patients well, and
• facilitate traditional research by helping researchers develop hypotheses, determine outcomes that matter to patients, and recruit patients for clinical trials.
We have enrolled over 14,000 participants, collected over 5 million data points, published five peer-reviewed studies, and seven white papers and scientific posters. MyLymeData has been hig

Communications:
LymeDisease.org is the largest and most trusted communications network for Lyme disease.
• Its website draws millions of visitors each year.
• Its blogs, Twitter, and Facebook postings have a greater engagement than any other Lyme disease patient organization.
• Its weekly newsletter reaches hundreds of thousands of readers each week.
• Its quarterly journal, the Lyme Times, is accessed by thousands of members of the organization.
Advocacy:
Our efforts have supported many legislative efforts on the state and federal level, as well as the creation of the federal Tick-Borne Disease Working Group
Our directors and key members of our team:
• have held key leadership roles at the International Lyme and Associated Diseases Society (ILADS), the national Patient Centered Outcomes Research Institute, Consumers United for Evidence-Based Healthcare (a Cochrane affiliated organization), and the Society to Improve Diagnosis in Medicine,
• have authored one book, two college textbook chapters on patient engagement and patient registries, over 50 peer-reviewed publications (including 5 big data studies), the GRADE based Lyme disease treatment guidelines of the ILADS, and the definition of chronic Lyme disease published by ILADS,
• have served on subcommittees of the federal Tick-Borne Diseases Working Group in each of the sessions conducted to date, the California Lyme Disease Advisory Committee, and as subject matter experts on patient registries for the University of Chicago (NORC) for Patient Centered Research Outcomes Institute,
• served on the executive committee of PCORnet, the big data initiative of the Patient Centered Outcomes Research Institute as well as on the inaugural panel of the Patient Engagement Advisory Panel of PCORI,
• have made over 100 presentations at professional and governmental conferences, including the American Academy for the Advancement of Science, the Cochrane Colloquium, the National Institute of Health Collaboratory, the NIH Science of Team Science, Kaiser Permanente, the Patient Centered Outcomes Research Institute, and its big data initiative PCORnet, and the Association of Health Care Journalists,
• have presented at many patient-oriented conferences throughout the United States.
• have been interviewed or featured by the New York Times, Wall Street Journal, Fox5NY’s special series Lyme and Reason, WBUR public radio in Boston, Outbreak News, the film Under Our Skin Part 2 as well as local newspapers, TV news shows, and independent podcasts.
• participated in the White House Precision Medicine Summit and the Citizen Science Forum and numerous other national and international governmental forums.
MyLymeData Accomplishments
Since its launch in 2015, MyLymeData has:
• enrolled: > 14,000 patients,
• collected over 5 million data points,
• launched new surveys on COVID-19 as well as Stigma, and Patient Representation,
• established 2 long-term academic collaborations (UCLA and University of Washington), and

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), other,

  • How is your organization using feedback from the people you serve?

  • With whom is the organization sharing feedback?

  • What challenges does the organization face when collecting feedback?

Financials

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Operations

The people, governance practices, and partners that make the organization tick.

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LymeDisease.org

Board of directors
as of 2/25/2021
SOURCE: Self-reported by organization
Board chair

Ron Lindorf

Brigham Young University

Term: 2017 -

Phyllis Mervine

No affiliation

Raphael Stricker, MD

Union Square Medical Associates

Lorraine Johnson

No affiliation

Barbara Barsocchini

No affiliation

Mitchell Hoggard

No affiliation

Dorothy Leland

No affiliation

Chris Green, MD

Green Oaks Medical Center

Ron Lindorf

Brigham Young University

Erica Lehman, MD

Pro Health Group

Caleb Manscill

No affiliation

Organizational demographics

SOURCE: Self-reported; last updated 11/05/2020

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

No data

Race & ethnicity

No data

Gender identity

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Disability

No data