Finding Unbiased, Credible Information About Your Rare Disease Can Be Difficult, This Compilation of Resources May Help

When you or your child is first diagnosed with a rare disease it can be so difficult to know where to turn. You want to learn everything about the condition, the treatment options, and the long term outlook. You may have lifestyle questions, about how changes in diet or exercise may improve your symptoms. You may have questions about mental health, coping skills, or managing fatigue with a chronic illness. You may have preventative questions such has how to prevent tick bites, and along with that, signs and symptoms of Lyme disease. But a simple google search could bring back information that is unreliable or inaccurate. The correct information is out there, but how do you find it?

It starts with your doctor.

A recent article by Catherine Kolonko, a medical writer, showcases the varying approaches that specialists have when providing their patients information. The overall conclusion however, was that it is best to first ask the patient what kind of information they are looking for and how they prefer to learn it. Specialists should be versed in all of the reliable sources of information for your disease, but if they provide all of this information at once, it can be overwhelming. Likewise, if they solely provide their favorite resource, it might not actually be the information you most desire.

“We all have our own inherent kind of biases, and I think the most important thing is to acknowledge this, then offer people a choice… of information.”

Some patients learn best by watching a video, reading other patient stories, or scanning a pamphlet. You may need or want information in a language other than English. No matter what information you’re looking for, and in what format, talking with a doctor is a good place to start to ensure you’re receiving credible data.

The ultimate goal is to find the most credible information you can that is as unbiased as possible.

Here is a list of some of the credible sources compiled from interviews Kolonko conducted with various specialists across the United States. This list is not comprehensive, but can be a good starting point for those aiming to learn more about their diagnosis.

  1. American College of Rheumatology (ACR)
    1. Patient fact sheets which provide basic information on various diseases
    2. Information on side effects, dosages, and risks of commonly prescribed medications
    3. Simple Tasks campaign has videos discussing what its like to live with rheumatic diseases and debunking myths.
    4. Includes Spanish translations
  2. National Institutes of Health
    1. Tip sheets to help patients find and evaluate credible sources of information
  3. Lupus Foundation of America
    1. Along with patient education materials, includes a social media aspect for patients to connect with and empower each other
  4. Centers for Disease Control and Prevention
  5. Johns Hopkins Medicine
    1. Includes both written education sheets and videos documenting the side effects of various treatments
    2. RheumTV, an ongoing collection of videos (more are created each month to meet requests). Includes videos on things like how to self-inject medications, giving patients an easy reference material at home.
  6. Mayo Clinic
    1. Overview of rheumatoid arthritis including information on its symptoms and diagnosis
    2. Has a wide array of information on its foreign-language websites
  7. Cleveland Clinic
  8. Hospital for Special Surgery (HSS)
    1. Online patient education materials include an overview of the condition, symptoms/diagnosis, and treatments
    2. Some illnesses also include a list of all current clinical trials
    3. Includes info on ankylosing spondylitis, vasculitis, and rheumatoid arthritis
    4. Includes info in Mandarin, Spanish, Cantonese, Russian, Creole, and Arabic among others.
  9. Santovia
    1. Patient education platform that works with electronic medical records systems. It includes short articles and videos
  10. National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) 
    1. Nonbranded, free educational materials that will be shipped to your door at no charge.
    2. Covers vasculitis, gout, scleroderma, and various other conditions.
    3. Has a separate Spanish website
    4. Includes information in Vietnamese, Korean, and Chinese
  11. The Arthritis Foundation
  12. UpToDate
    1. Physician database that also has patient education data
    2. Beyond the Basics section for patients searching for more in-depth information about their illness
  13. Cochrane Reviews
    1. Reviews and plan language summaries on various topics
    2. Spanish translations are available

You can read more about these resources and others here

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