Rare Disease Day seeks to call attention to rare diseases as a public health issue and to reinforce the increased need for access to information, research and treatment. It is coordinated at the international level by the European Organisation for Rare Diseases (EURORDIS) and by the National Organization for Rare Disorders (NORD) in the USA.

It is estimated that there are between 5000 and 8000 known rare diseases affecting 250 million people across the world. Shire has treatments for Fabry disease, Hereditary Angioedema and Hunter syndrome. In addition, the U.S. Food & Drug Administration (FDA) recently approved VPRIV (velaglucerase alfa for injection), Shire's investigational enzyme replacement treatment for Type 1 Gaucher disease.

‘For many patients and their families, the journey to a diagnosis and subsequent treatment can be a long, complicated process,’ said Sylvie Gregoire, President of Shire Human Genetic Therapies. ‘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.’

Shire's Global Rare Disease Day Initiatives include:

• Extending BraveCommunity.com, its online resource centre, which aims to connect patients with each other and to provide information about rare diseases.
• Supporting the Global Genes Project, 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.