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New Blog Series: Rare Disease Resources

This is the first in a series of blog articles detailing online resources concerning rare diseases. Searching the Internet for these resources can be frustrating and an emotional experience—and not in a good way.

Where we’ve had experience with any of these resources, I’ve tried to give my unbiased opinion and experiences—both good and bad.

Best Doctors

Best Doctors was founded in 1989 and is a medical information services connecting individuals with difficult or rare medical diagnoses with the best doctors. Currently there are over 450 doctors (selected through a peer-review process). It is a private company—so it costs. We were fortunate in that it’s a service that was provided through my health insurance.

Our Experience: In our case, our insurance contacted them and then Best Doctors reached out to us. After that I spoke with a nurse each week on what we needed to provide (for instance, medical records, test results, etc).

After major procedures we received a fairly comprehensive package detailing the Best Doctors’ doctor opinions and diagnosis. This generally matched what our primary hematologist believed, and in fact he and the Best Doctors’ hematologist knew each other and regularly consulted on complex cases such as Phoebe’s.

The Good: The nurse that we were assigned was fantastic—she was compassionate and caring throughout the process, and was always available to take questions. She was also very clear about what we needed to provide, and offered advice on how to get it (more below in the Not So Good Section). And while the diagnoses/opinions were similar as to what our doctor was telling us, it was good to hear some consistency in the way treatment was proceeding.

The Not-So Good: This is less about Best Doctors and more about the difficulty the hospital placed on us in getting Phoebe’s medical records to Best Doctors. Getting the medical records released to Best Doctors was never easy and usually involved getting multiple levels of hospital administration involved. As I noted above, the Best Doctors nurse helped us through the process. This was reportedly due to HIPAA…but I suspect other factors. Although this was not the fault of Best Doctors, it’s something to keep in mind.

Verdict: If you have the service through your insurance provider, take advantage of it—especially if your medical team is not as familiar with the rare disease you are experiencing.

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