Rare Diseases - "The Voice of 12,000 Patients": extracts from the speech by Androulla Vassiliou
Type: Speech - summary
End production: 03/03/2009 First transmission: 03/03/2009
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.
Only the original language version is authentic and it prevails in the event of its differing from the translated versions.
||Exterior view of the European Commission building
||Androulla Vassiliou, Member of the EC in charge of Health, with Yann Le Cam, Chief Executive Officer of Eurordis (European Organisation for Rare Diseases) (2 shots)
||Cutaways of the book "The Voice of 12,000 Patients" (2 shots)
||General view of the launching event
||SOUNDBITE (English) by Androulla Vassiliou, Member of the EC in charge of Health: Action is desperately needed to improve the time it takes for rare diseases' patients to receive a correct diagnosis and thus start receiving appropriate treatment; these are objectives recognised and supported by the Commission in our recent communication.
||SOUNDBITE (English) by Androulla Vassiliou: When I launched the EC's proposals, in November 2008, I said that we wanted to bring patients with rare diseases out of their shadows; the book 'The Voice of 12,000 Patients' helps to do exactly that; I hope that the Rare Diseases Day will provide a platform for us all to hear those voices, to help guide and inspire us as we continue our work on rare diseases into the future.
||SOUNDBITE (English) by Yann Le Cam, Chief Executive Officer of EURORDIS: the first merit of the book 'the Voice of 12,000 is that it allows to go beyond anecdotes, to gather huge amount of data's, real-life experience and expectations of people living with rare diseases to access diagnosis and care in Europe today.
||Cutaways (2 shots)