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Shire’s Rare Disease Impact Report

Posted by | 10:48am on Friday, May 24, 2013 | No Comments
Shire's Rare Disease Impact Report

Research on the rare disease community is, well, rare. So it was with anticipation that I reviewed Shire’s “Rare Disease Impact Report: Insights from patients and the medical community.” The results provide additional data that support Siren’s six rare disease insights. The report can be downloaded and I advise reading it for all the details, but here are the key findings.

Greater collaboration
The first finding is around the diagnosis and treatment of orphan conditions. According to the patients surveyed, it took an average of 7.6 years in the US and an average of 5.6 years in the UK to receive an accurate diagnosis. This process typically included 2 to 3 misdiagnoses. This long journey to diagnosis can have a significant physical, emotional and financial toll on patients.
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