CAMBRIDGE, Massachusetts and BASINGSTOKE, England, Mar. 1 /PRNewswire-AsiaNet/ —
Shire plc (LSE: SHP, NASDAQ: SHPGY), the global specialty biopharmaceutical company, today announced its support of World Rare Disease Day, joining patients, physicians, and patient organizations around the world to support a day that focuses attention on rare diseases as a public health issue and highlights the need for more understanding and awareness about these diseases.
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World Rare Disease Day is coordinated at the international level by the European Organisation for Rare Diseases (EURORDIS) and the National Organization for Rare Disorders (NORD) in the US and aims to draw attention to the gaps in healthcare that exist for rare disease patients worldwide, and work to find global solutions.
It is estimated that there are between 5,000 and 8,000 known rare diseases affecting around 250 million people in the world. As a leader in the orphan disease space for over twenty years, Shire has focused its work on researching, developing and marketing products for Fabry disease, Hereditary Angioedema (HAE), Hunter syndrome, and Gaucher disease, as well as building and investing in a pipeline of innovative products and solutions to treat rare diseases.
“For many patients and their families, the journey to a diagnosis and subsequent treatment for a rare disease can be a long, complicated process,” said Sylvie Gregoire, President of Shire HGT. “Shire is committed to enabling people with life-altering conditions to lead better lives – and for us, this includes improving access to information as well as providing much-needed treatment for rare diseases. We are proud to support World Rare Disease Day and hope that this day can highlight the amazing people who encompass the rare disease community, and their unique and important situation as a global public health concern.”
Shire’s Global Rare Disease Day Initiatives include:
– Extending BraveCommunity.com (http://www.bravecommunity.com/), its online resource center that aims to connect patients 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.
– Sponsoring the first ‘STOP RARE’ disease awareness event in Lausanne, as well as the Symposium “Wissen Heilt!” held in Basel on February 26th.