Global initiatives underscore shire's long-term commitment to rare disease community

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Mar 3 2014Shire plc

Shire plc (LSE: SHP, NASDAQ: SHPG) today announced its support of Rare Disease Day and invites others to join them in its continued commitment to the rare disease community. Observed annually on the last day of February, Rare Disease Day is coordinated at the international level by the European Organisation for Rare Diseases (EURORDIS) and by National Alliances and Patient Organizations at the national level.

There are estimated to be between 6,000 and 8,000 rare diseases worldwide. These diseases affect nearly 30 million people in the US and approximately 30 million people in Europe.^[¹^]^,^[²^] A disease or disorder is classified as rare in Europe when it affects less than 1 in 2,000 people and in the U.S. when it affects fewer than 200,000 people.^[¹^]^,^[³^] It is estimated that 75 percent of rare diseases affect children, and 30 percent of rare disease patients will die before the age of 5.

The theme for this year's Rare Disease Day, "Join Together for Better Care", encourages everyone supporting the rare disease community to find ways to work together to help both patients and their families find common solutions for care and remind them they are not alone. Rare disease care has many facets and is a universal need, and only through joining together will we find ways to provide the different kinds of care that people living with rare diseases need to improve their lives.

"On this important day, we show our commitment to the rare disease community by joining forces to raise awareness of rare diseases worldwide," said Jeff Poulton, Head of the Rare Disease Business Unit at Shire. "Shire's purpose is to enable people with life-altering conditions to lead better lives and so we support the efforts of Rare Disease Day to better patient care. We hope that by working together we can help ensure patients with rare diseases receive consistent, reliable and effective treatments and services to meet their individual needs."

Shire is sponsoring and participating in a variety of Rare Disease Day activities, and partnering with local patient organizations around the world, to help educate physicians and communities about rare diseases and advocate for those whose lives are impacted. Some of these initiatives include:

The Global Genes Project with Wear That You Care™ to raise awareness of rare genetic disorders;
EURORDIS Roundtable of Companies on the topic of "Unlocking Europe's Potential in Rare Disease Therapies" on February 26 in Brussels, Belgium;
Rare Disease Day Legislative Advocates (RDLA) "Rare Disease Day Legislative Conference and Lobby Day" from February 25-27^th in Washington DC, US;
Spanish Federation of Rare Diseases (FEDER) experts meeting on February 21^st and the official Rare Disease Day event on February 28^th in Madrid, Spain;
Lysosomal Storage Disease Department at the Queen Elizabeth Hospital in Birmingham, UK, rare disease event;
The 2^nd National Editorial Award on Rare Disease and Rare Cancers organized by OMAR (Observatory Rare Disease) in Italy;
Rare Voices Australia (RVA) to hold a Rare Disease Day meeting, in partnership with Wesley Hospital, in Brisbane, and assisting RVA in holding a Friends of Rare Disease Parliamentary event at Parliament House in Canberra;
Rare Disease Day activities organized by the non-profit organization Promotion of Research on Intellectual Property (PRIP) Tokyo in Japan;
Argentinean Federation of Rare Diseases (FADEPOF) awareness campaign "Descubrinos, estamos acá" ("Discover us, we are here") and activities for Rare Disease Day.