Shire Leads New Initiative to Reveal Challenges Facing Rare Disease
Community
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 members include Nicole
Boice, founder and CEO, Global Genes | R.A.R.E Project; Dr.
Priya S. Kishnani, Division Chief,
Medical Genetics, Duke University
Medical Center; Tomas Philipson,
Daniel Levin professor of public
policy studies, The University of
Chicago; Alastair Kent,
director, Genetic Alliance UK; Dr. Christian J. Hendriksz, Clinical Lead, Adult
Inherited Metabolic Disorders, Salford Royal NHS Foundation Trust;
and Mike Drummond, professor of
health economics, University of York.
Shire Human Genetic Therapies (HGT), the rare disease business
of Shire, has over twenty years of experience discovering,
developing, manufacturing, and commercializing novel therapies and
solutions for rare diseases. The Company has built and invested in
a pipeline of innovative products and solutions to treat rare
diseases. The Rare Disease Impact Report will be the first
research to go beyond identifying unmet medical needs within the
rare disease community.
"At Shire, patients are at the heart of everything we do and we
continually strive to provide support for those touched by rare
diseases," said Sylvie Gregoire,
president, Shire HGT. "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. Shire is delighted to take the lead in bringing
this to the attention of all those who can transform the lives of
rare disease patients for the better."
For further information please contact:
Media
|
Jessica
Cotrone (Human Genetic Therapies)
|
jcotrone@shire.com
|
+1 781 482
9538
|
Notes to editors
SHIRE PLC
Shire's strategic goal is to become the leading specialty
biopharmaceutical company that focuses on meeting the needs of the
specialist physician. Shire focuses its business on attention
deficit hyperactivity disorder, human genetic therapies,
gastrointestinal diseases and regenerative medicine as well as
opportunities in other therapeutic areas to the extent they arise
through acquisitions. Shire's in-licensing, merger and
acquisition efforts are focused on products in specialist markets
with strong intellectual property protection and global
rights. Shire believes that a carefully selected and balanced
portfolio of products with strategically aligned and relatively
small-scale sales forces will deliver strong results.
For further information on Shire, please visit the Company's
website: www.shire.com.
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Statements included herein that are not historical facts are
forward-looking statements. Such forward-looking statements involve
a number of risks and uncertainties and are subject to change at
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and uncertainties include, but are not limited to, risks associated
with: the inherent uncertainty of research, development, approval,
reimbursement, manufacturing and commercialization of the Company's
Specialty Pharmaceuticals, Human Genetic Therapies and Regenerative
Medicine products, as well as the ability to secure new products
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References
- European Organisation for Rare Diseases (EURORDIS) website.
"Rare Diseases: understanding this Public Health Priority."
http://www.eurordis.org/IMG/pdf/princeps_document-EN.pdf. Accessed
October 25, 2012.
- The Global Genes Project website. "RARE Facts and Statistics."
http://globalgenes.org/rarefacts/. Accessed October 25, 2012.
SOURCE Shire plc