In January 2013, Shire put together a Rare Disease Import Report, after a four-week period of online surveys conducted among US/ UK rare disease patients and their caregivers, physicians who treat patients with rare diseases, payors handling reimbursements for healthcare plans and governments/institutions, and thought leaders in the rare disease space. These surveys conducted, were fielded through market research agency ORC International and distributed by advocacy group partners Global Genes and the Genetic Alliance UK.
Over 7000 rare diseases have been identified around the world. However, little attention has been given as rare diseases are not common and affect only thousands and sometimes only hundreds of patients globally. However, if rare diseases were to be isolated as an entity of its own, approximately 30 million people in US living, has a condition that is a rare disease, and 3.5million people in UK, has a rare disease condition. Unfortunately, rare diseases do not solely impact only the patient, but it is a condition that also impacts the families, friends, caregivers, physicians, payors and society as a whole.
Shire is a platinum sponsor at the upcoming World Orphan Drugs Congress Asia, happening 18-19 June 2013 in Grand Copthorne Waterfront Hotel, Singapore.