HGT business unit joins the global rare disease community to raise awareness for underserved populations; launches online resource to unite patient community
CAMBRIDGE, Mass., Feb. 26 /PRNewswire/ -- Shire Human Genetic Therapies (HGT), a business unit of Shire plc, the global specialty biopharmaceutical company, today announced it will join together with the National Organization of Rare Diseases (NORD) to celebrate World Rare Disease Day on February 28, 2009. The purpose of this day is to call attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world.
In addition to supporting advocacy-driven partnership activities, which include a grassroots video campaign and outreach to policy makers to encourage better access to treatment and increased reimbursement for orphan drugs, Shire HGT is developing a new, comprehensive online resource center, set to launch in early 2009. This new online resource--called the BRAVE Community--is designed to help patients find important medical information and connect with one another. Shire HGT is inviting the rare disease community to visit http://www.BRAVECommunity.com to sign up to request information about specific rare genetic diseases and to be notified by email when the website officially launches.
"The rare disease community is often overlooked by others in the industry, which is why it gives us great pleasure to celebrate World Rare Disease Day," said Sylvie Gregoire, President of Shire HGT. "Our organization is committed to enabling people with life-altering conditions to lead better lives--and for Shire, this includes improving access to information as well as providing therapies for these diseases."
A rare disease is one that affects fewer than 200,000 Americans. According to the National Institutes of Health (NIH), there are nearly 7,000 rare diseases affecting nearly 30 million Americans. While rare individually, NORD estimates that collectively, rare diseases affect nearly 1 in 10 Americans.
"People with rare diseases remain a medically underserved population in every country," said Peter Saltonstall, president of NORD, which is sponsoring Rare Disease Day in the U.S. "This day is intended to bring together the patients and families with rare disease to discuss the need for greater awareness, more research, and better access to treatment."
About Rare Disease Day
Rare Disease Day began in 2008 in Europe. In 2009, Rare Disease Day will be observed on a global basis with participation from the United States, Canada, Australia and China, among others. For more information on Rare Disease Day visit the Rare Disease Day website at http://www.rarediseaseday.org.
NORD, a federation of individuals and patient organizations, was established in 1983 by the patient leaders who worked to get the Orphan Drug Act passed. It provides advocacy in Washington, DC, on behalf of the rare disease community; research grants and fellowships; educational services for patients, the public, and medical professionals; and patient assistance programs. You may support NORD's initiatives by spreading the word and sharing your story at http://www.rarediseaseday.org/yourstory.
Notes to editors
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 and hyperactivity disorder (ADHD), human genetic therapies (HGT) and gastrointestinal (GI) diseases 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.
"SAFE HARBOR" STATEMENT UNDER THE PRIVATE SECURITIES LITIGATION REFORM ACT OF 1995
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 any time. In the event such risks or uncertainties materialize, the Company's results could be materially adversely affected. The risks 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 Pharmaceutical and Human Genetic Therapies products, as well as the ability to secure and integrate new products for commercialization and/or development; government regulation of the Company's products; the Company's ability to manufacture its products in sufficient quantities to meet demand; the impact of competitive therapies on the Company's products; the Company's ability to register, maintain and enforce patents and other intellectual property rights relating to its products; the Company's ability to obtain and maintain government and other third-party reimbursement for its products; and other risks and uncertainties detailed from time to time in the Company's filings with the Securities and Exchange Commission.
|SOURCE Shire Human Genetic Therapies|
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