Health care providers feel unprepared to identify and treat rare diseases due in part to the small patient population and partly to lack of opportunity to network with rare-disease specialists, a Shire survey found. Patients said they feel depressed, anxious and isolated in their efforts to obtain an elusive diagnosis for rare conditions and often struggle to afford the costs. Insurers expressed a reluctance to spend money on treatments they view as unproven and noted a lack of benchmarks for a standard of care for patients with rare diseases.

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