Patients with rare diseases struggle to find support

03/22/2010 | HealthDay News

People with rare diseases often face months or years of misdiagnosis and confusion, and even when diagnosed they may have difficulty finding a support network. "We get phone calls from literally desperate people. I don't know if they are hopeless. They are desperate. They can feel very isolated," said RN Stefanie Putkowski, a clinical information specialist for the National Organization for Rare Disorders.

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