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Shire Launches Report that Quantifies the Health, Psycho-social and Economic Impact of Rare Diseases
Date:4/9/2013

LEXINGTON, Mass., April 9, 2013 /PRNewswire/ -- Shire plc (LSE: SHP, NASDAQ: SHPG) today launched a Rare Disease Impact Report, which uncovers the health, psycho-social, and economic impact of rare diseases on patient and medical communities in the United States (US) and United Kingdom (UK). The report, developed in collaboration with an external advisory board of thought leaders in the medical, advocacy, health policy and health economics fields, will be distributed at the World Orphan Drug Congress in Washington, DC (April 9-11) and is available for immediate download at www.rarediseaseimpact.com.

According to more than 1,000 survey responses from a multi-stakeholder audience sample, the Rare Disease Impact Report reveals1:

  • It takes, on average, more than seven years in the US and five years in the UK for a patient with a rare disease to receive a proper diagnosis
  • On the journey to diagnosis, a patient typically visits up to eight physicians (four primary care and four specialists) and receives two to three misdiagnoses
  • Physicians (both primary care and specialists) often don't have the time, resources and information to properly diagnose/manage patients with rare diseases, compared to more common diseases
  • Due to the uncertainty, the lack of available information, resources, and economic strains, rare diseases take a major emotional toll on patients and their caregivers

"This Impact Report brings to light the specific barriers to quality care that exist for patients with rare diseases; particularly the challenges in getting an accurate diagnosis, adequate information and ongoing care," says

SOURCE Shire plc
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