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Lyme Disease.org

Lyme Disease.org

Chico, CA 95973
Tax ID68-0214101

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About this organization

Revenue

$626,533

Expenses

$637,582

Website

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

About

Education - We publish the Lyme Times, the only national print journal dedicated to tick-bourne diseases. The organization also helps raise the level of public awareness of Lyme disease via newspapers, radio, TV and the internet.

Interesting data from their 2020 990 filing

The mission of the non-profit, as stated in the filing, is “Lymedisease.org (formerly calda) advocates nationwide for access to better health care for patients through public health policy and legal analysis, education, and medical research. we publish the lyme times quarterly journal, maintain an extensive educational website at www.lymedisease.org, help fund physician training, and conduct patient surveys. what makes lymedisease.org unique is our combination of legal, ethical and policy analysis and advocacy combined with our ability to communicate effectively through print, email, and websites. lymedisease.org board members have written more than 30 peer reviewed publications for medical and legal journals.”.

When referring to its tasks, they were described as: “Lymedisease.org (formerly calda) advocates nationwide for access to better health care for patients through public health policy and legal analysis, education, and medical research.”.

  • The non-profit is operating legally in the state of CA.
  • The non-profit's address for the year 2020 is listed as PO BOX 716, SAN RAMON, CA, 94583 in the filing.
  • The form submitted by the non-profit organization for 2020 reports 4 employees.
  • Does not operate a hospital.
  • Does not operate a school.
  • Does not collect art.
  • Does not provide credit counseling.
  • Does not have foreign activities.
  • Is not a donor-advised fund.
  • Is not a private foundation.
  • Expenses are between $500,000 and $1,000,000+.
  • Revenue is between $500,000 and $1,000,000+.
  • Revenue less expenses is -$11,049.
  • The CEO compensation package within the organization is established through a review and approval process by an independent body.
  • The organization has a written policy that describes how long it will retain documents.
  • The organization has 9 independent voting members.
  • The organization was formed in 1990.
  • The organization has a written policy that addresses conflicts of interest.
  • The organization is required to file Schedule B.
  • The organization is required to file Schedule O.
  • The organization pays $281,000 in salary, compensation, and benefits to its employees.
  • The organization pays $5,116 in fundraising expenses.
  • The organization provides Form 990 to its governing body.
  • The organization has minutes of its meetings.

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