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Looking for Reliable Health Info?

If you have a rare or chronic condition, start with your doctor and patient advocacy organizations.

mobile phone with health icons

Before the internet, it wasn’t easy to find health information. Books were an option or you might have found pamphlets about a medical condition in the waiting room at the doctors’ office.

Of course, you could ask the doctor. Talking with your health care team remains the gold standard when you need guidance, but the additional options for self-guided education in the form of online health information have exploded over the last 20 years.

If only all of it was trustworthy, valid and vetted by medical experts.

Last month, in an article published by the Journal of the American Medical Association (JAMA) Medical News, a public health expert at Purdue University said consumers should use caution, especially when social media sites, like TikTok and X, serve up new content from unfamiliar accounts. The info might not be true and the account’s content could be generated by a bot or artificial intelligence rather than a human being, said Laura Schwab-Reese, MA, PhD, an associate professor at Purdue University’s Department of Public Health. These health-related social media posts also could be a ploy to get you to buy something.

“If the platforms are showing you what to watch or read, you don’t know who is producing the content or why,” Schwab-Reese said.

For people managing rare diseases, the search for reliable medical information has an added dimension of difficulty. There are fewer authoritative sources for rare conditions and less is known because they haven’t been researched as thoroughly. Here are five steps that can steer you toward high-quality health information:

  1. Visit the websites of patient advocacy organizations, including the National Organization for Rare Disorders (NORD) and EURORDIS, which serves rare disease patients in Europe. Find links to patient organizations here for these conditions:

    Hemophilia A

    Hemophilia B

    von Willebrand Disease

    Primary Immunodeficiency

    Chronic Inflammatory Demyelinating Polyneuropathy (CIPD)

    Hereditary Angioedema (HAE)

    Alpha 1 Antitrypsin Deficiency

  2. Also look to government health resources, such as the National Institutes of Health (NIH) in the United States and the National Health Service.
  3. When evaluating a source of health or medical information, ask:
    • Do the articles have authors?
    • Does the site link to established sources, such as government health resources, medical centers, universities and medical journals? 
    • Are experts quoted or listed as reviewers?
    • Is there a date that says when the article was written?
  4. Take a tutorial about evaluating online health information., a resource provided by NIH’s National Library of Medicine, offers the short course.
  5. Even when the information seems reliable, always check with your doctor. Monica, whose 25-year-old daughter Amanda has a primary immunodeficiency, says she and her daughter follow that rule. Amanda’s immune system condition makes her more vulnerable to serious infections.

“We still run everything by (our immunologist),” Monica said. “Anything we read or hear about, he has the right information for us. So having a health care professional that is up on the latest research is important.”