Rare Disease Report
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Patients & Caregivers

Daily Medical Decisions in an Undiagnosed Rare Disease Household

APRIL 03, 2017
isabel Jordan


Isabel Jordan provides an example of the numerous decisions that go into caring for a child with an undiagnosed rare disease. In this example, her son began shaking violently and it was unclear if they needed to go to the hospital, the clinic, or stay at home. As Isabel explains, each of the options had its pluses and minuses and it is often unclear what the best decision is to make - especially when the medical problem occurs outside normal business hours.

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