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Shire Leads New Initiative to Reveal Challenges Facing Rare Disease Community
Date:11/19/2012

LEXINGTON, Mass., Nov. 19, 2012 /PRNewswire/ -- Shire plc (LSE: SHP, NASDAQ: SHPGY) today announced a new initiative – the Shire Rare Disease Impact Report – to research the health, psycho-social, societal and economic impact of rare diseases in patient and medical communities. Comprehensive surveys of patients, caregivers, physicians, payors and thought leaders in the United States and the United Kingdom are underway. Survey results will be published and available in the first half of 2013.

Rare diseases are conditions that affect a small portion of the population and are often chronic, progressive, degenerative, Iife-threatening and disabling.1 While individual rare diseases are uncommon and disparate, collectively there are approximately 7,000 different types of rare diseases and disorders affecting an estimated 350 million people worldwide.2

The Shire Rare Disease Impact Report aims to uncover the unique challenges facing the rare disease community in areas such as diagnosis, scientific understanding, treatment options, and social services. The Impact Report will contribute to the continued effort to better understand these complex diseases and how best to optimally manage them for the greatest patient benefit.

"Despite the progress that has been made over the past few decades in the rare disease space, there is still an urgent need to better understand this community and its needs," says Nicole Boice, founder and CEO, Global Genes | R.A.R.E Project. "I'm thrilled to be involved in the development of this Rare Disease Impact Report as its findings will help elevate awareness for the rare disease community and guide future research and education for affected patients and their families."

An external advisory board anchored by thought leaders in the medical, advocacy, health policy and health economics fields will lend its expertise to the development of the Impact Report. Advisory board member
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SOURCE Shire plc
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