Shire launches rare-disease research project

Results expected in early 2013

LEXINGTON, Mass. — Drug maker Shire has started a research program focused on rare diseases and their effects on patients and healthcare professionals, the company said Monday.

Shire announced the launch of the Shire Rare Disease Impact Report, which includes surveys of patients, caregivers, physicians, payers and others in the United States and United Kingdom, with results expected in the first half of 2013.

According to the Global Genes Project, about 7,000 types of rare diseases affect an estimated 350 million people worldwide and are often chronic, progressive, degenerative, life-threatening and disabling.

"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," said Nicole Boice, founder and CEO of the Global Genes I R.A.R.E. Project and a member of the project's advisory board. "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."

Other members of the advisory board are Priya S. Kishnani, Duke University Medical Center division chief for medical genetics; Tomas Philipson, professor of public policy studies at the University of Chicago; Alastair Kent, director of the Genetic Alliance UK; Christian Hendriksz, clinical lead for adult inherited metabolic disorders at the United Kingdom's Salford Royal NHS Foundation Trust; and Mike Drummond, professor of health economics at the University of York.

"At Shire, patients are at the heart of everything we do, and we continually strive to provide support for those touched by rare diseases," Shire HGT president Sylvie Gregoire said. "We hope the findings from this Rare Disease Impact Report will provide the rare disease community at large with new, unique insights on how best to address the holistic needs of the rare disease community and drive important conversations and innovation."

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