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Rare Disease Day seeks to call attention to rare diseases as a publichealth issue, and to reinforce the increased need for access to information,research and treatment. It is coordinated at the international level byEuropean Organisation for Rare Diseases (EURORDIS) and by the NationalOrganization for Rare Disorders (NORD) in the US.
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It is estimated that there are between 5,000 and 8,000 known rarediseases affecting 250 million people in the world. Shire has commerciallyapproved and available treatments for Fabry disease, Hereditary Angioedema(HAE) and Hunter syndrome. In addition, Shire expects the U.S. Food & DrugAdministration (FDA) to issue its decision for VPRIVTM (velaglucerase alfafor injection), Shire's investigational enzyme replacement treatment for Type1 Gaucher disease, by February 28.
"For many patients and their families, the journey to a diagnosis andsubsequent treatment can be a long, complicated process," said SylvieGregoire, President of Shire Human Genetic Therapies (HGT). "Shire iscommitted to enabling people with life-altering conditions to lead betterlives - and for us, this includes improving access to information as well asproviding much-needed treatment for rare diseases."Shire's Global Rare Disease Day Initiatives include: - Extending BraveCommunity.com (http://www.bravecommunity.com), its online resource center that aims to connect patients with each other and to provide important information about rare diseases. - Supporting the Global Genes Project (http://www.globalgenesproject.org) , a grassroots effort to use denim jeans to raise global awareness of rare genetic disorders. - Supporting its non-profit partners as they visit Capitol Hill to advocate for patients with rare diseases in Washington, D.C., - Co-sponsoring with FEDER (Spanish Federation for Rare Diseases) the Annual Running Race for Rare Disease Day in Madrid, Spain. - Organizing a special walk on February 28th in Brazil to raise awareness of rare diseases in the country. It is expected that more than 20 patient organizations and their members will participate. For the full press release please visit http://www.bravecommunity.com Media Contact Jessica Mann (Rest of the World) +44(0)1256-894-280 Jessica Cotrone (North America, HGT) +1-617-613-4640 http://www.shire.com
SOURCE Shire Pharmaceutical
