Press Release: European Rare Diseases Day: listen to the voice of 12,000 patients

To mark the European Rare Disease Day 2009, Commissioner for Health, Androulla Vassiliou hosted the launch of an important and remarkable book – 'The Voice of 12,000 Patients – in Brussels. 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. The book 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.