| The Voice of 12,000 Patients (Feb 09) |
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A new book published by EURORDIS
The findings of the EurordisCare2 Survey on delays in, and conditions surrounding the announcement of diagnosis, show that patients have to wait for a long time to be diagnosed, and that they are often misdiagnosed. The findings also show that the way the announcement of the diagnosis is carried out, and what is said, are most often unsatisfactory. The findings of the EurordisCare3 Survey, on the experience and expectations of rare disease patients on access to care, show that many patients need access to a variety of medical services, which are sometimes difficult or impossible to access, and not of the required quality. Social services are also often needed by patients and, if somewhat easier to access than medical services, don’t always meet patients’ expectations. The results also show that the impact of the disease on patients and families is significant, with a recurring need to move house, reduce or even stop work. Finally, rejection by health care professionals is not uncommon - partly due to the complexity of the disease. Centres of Expertise were also part of the surveys, and the book includes the opinion of patients on the functions Centres should provide and on their mode of operation. The creation of European Reference Networks, physical or virtual networking of knowledge and expertise, would provide the potential for higher European added-value, while respecting the responsibility of Member States for the organisation and management of their Centres of Expertise and health care systems. The book describes what it means to live with a rare disease in the 21st century and contains patient testimonies, as well as photos. It is written in English but includes an executive summary in six languages. The book will be distributed by EURORDIS to its members, and will be easy to download from the EURORDIS and RARE DISEASE DAY 2009 websites. Citizens’ Summary on Rare Diseases, and Press Pack: Facts & Figures prepared by the European Commission Directorate-General for Health & Consumers
You can read the book online.
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Great news for rare disease patients! The Voice of 12,000 Patients, a new book published by EURORDIS, is about to be launched on RARE DISEASE DAY 2009. The book presents the analysis of the data collected through the EurordisCare2 and EurordisCare3 surveys on the experience and expectations of 12,000 patients regarding access to diagnosis and health services, for a variety of significantly relevant rare diseases across Europe. The book details the methodology, overall results, results by country and by disease, and how the surveys have contributed to the development of actions in favour of rare diseases.
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2009-03-11 
English 
16.47 MB 68
