New Delhi: Shire plc has 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, highlights the under-recognized prevalence of rare diseases.
Speaking on the launch of the campaign on World Rare Disease Day, Mr Vineet Singhal, Country Head, Baxalta Bioscience India Pvt. Ltd (now part of Shire) said, “Awareness about Rare Diseases in India is very minimal and there is a dire need to create awareness on the importance of timely and appropriate diagnosis that can help make difference in the lives of patients suffering from rare diseases. The Rare Count campaign in India and Globally will aim to reach out to such patients through social media platforms. As 66% of the 180 million Internet users in urban India regularly access social media platforms, we strongly feel this campaign will help in reaching out to rare disease patients. At Shire we are committed to these patients and put their wellness first.”
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 the site 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 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 rare disease communities are 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.