Lexington, Mass., USA – February 23, 2017 – Shire plc (LSE: SHP, NASDAQ: SHPG) today announced the launch of "Rare Count" in honor of Rare Disease Day and the 350 million people worldwide living with rare diseases, which equates to nearly one in 20 global citizens. It is estimated that 50% of rare diseases begin in childhood. The campaign, open for all to participate at www.shire.com/RareCount, highlights the under-recognized prevalence of rare diseases.
The Rare Count campaign applies the "one in 20" rare disease statistic to calculate the potential number of contacts in a user’s social network who could be living with a rare disease. The shareable result represents the user’s "Rare Count" and underscores the potential personal impact of rare diseases. Anyone can go to www.shire.com/RareCount to calculate and share their individualized Rare Count through Facebook, Twitter or LinkedIn. For every person who participates, Shire will contribute $1, up to $10,000 to each of the following umbrella patient advocacy groups focused on rare diseases: National Organization for Rare Disorders, Global Genes and EURORDIS (Rare Diseases Europe).
"At Shire, we believe that every patient counts, no matter how rare the condition, and we are focused on championing for people living with rare diseases to ensure their distinct unmet needs are met," said Philip J. Vickers, Ph.D., Global Head of Research and Development at Shire. "Correct and timely diagnoses remain key challenges in the rare disease community. Our commitment extends beyond our innovative drug pipeline to our unwavering efforts to increase rare disease awareness with the goal of improving the diagnosis pathway for rare disease patients."
Today, there are about 7,000 known rare diseases. While each rare disease community is small, the overall prevalence of rare diseases may be higher than the public recognizes. Since low awareness can contribute to the ongoing challenges facing people living with rare diseases, public education is critical. Shire is timing the Rare Count campaign to coincide with Rare Disease Day, an annual awareness day focused on educating the public about rare diseases and their associated challenges.
In addition to the Rare Count campaign, Shire employees at sites around the world are honoring people living with rare diseases by leading or participating in awareness-raising activities.
About "Rare Count"
Shire’s Rare Count campaign underscores Shire’s commitment to raising awareness of rare diseases. The campaign uses a social media calculator to apply the "one in 20" rare disease statistic to a user’s personal network, thereby estimating the potential number of contacts in their network who could be living with a rare disease. The calculator and results can be shared via Facebook, Twitter and LinkedIn. The landing page also includes options to customize results by country. The personalized, shareable result represents the user’s "Rare Count." Visit www.shire.com/RareCount to calculate and share your individual Rare Count.
About Rare Disease Day
Rare Disease Day is an annual awareness day dedicated to educating the public about rare diseases and their associated challenges. It takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face. Rare Disease Day was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®.
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Shire is the leading global biotechnology company focused on serving people with rare diseases and other highly specialized conditions. We strive to develop best-in-class products, many of which are available in more than 100 countries, across core therapeutic areas including Hematology, Immunology, Neuroscience, Ophthalmics, Lysosomal Storage Disorders, Gastrointestinal / Internal Medicine / Endocrine and Hereditary Angioedema; and a growing franchise in Oncology.
Our employees come to work every day with a shared mission: to develop and deliver breakthrough therapies for the hundreds of millions of people in the world affected by rare diseases and other high-need conditions, and who lack effective therapies to live their lives to the fullest.