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Rare Diseases - "The Voice of 12,000 Patients": extracts from the speech by Androulla Vassiliou

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To mark the European Rare Disease Day 2009 (February 28), Androulla Vassiliou, Member of the EC in charge of Health, hosted the launch of the book – “The Voice of 12,000 Patients” – in Brussels, today. This book, produced by the European Organisation for Rare Diseases (EURORDIS) and co-funded by the European Commission, provides a unique insight into patients' perspectives in rare disease diagnosis, treatment, and care. It concludes that action is needed to improve and accelerate the time it takes for the diagnosis of rare diseases. It also illustrates the expectations and experiences of rare disease patients in access to care with 26% of patients reporting difficulty in access to services. The Commission supports several projects in rare diseases under the Public Health Programme and research programmes.
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Type: EbS   Reference: 62268   Date: 03/03/2009   Duration: 00:02:40
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