By Martin Banks - 3rd March 2009
This policy can save thousands of lives each year and improve the quality of life of millions
Yann Le Cam
A new report has said that 25 per cent of patients with rare diseases wait between five and 30 years to get confirmation of their illness.
The report, by the European organisation for rare diseases (Eurordis), also says 40 per cent of respondents were initially misdiagnosed while a quarter had to travel to a different region to obtain a diagnosis.
Eurordis says the findings of its EU-wide survey highlight problems of diagnosis and access to medical and social services for many of the 36 million people in Europe with a rare disease.
The survey results are included in a book, entitled 'the voice of 12,000 patients', launched in Brussels on Tuesday by EU health commissioner Androulla Vassiliou.
Speaking at the launch, the commissioner said the survey and book represented an "important step forward" in achieving a better understanding of rare diseases.
She said she was "convinced" that current EU strategy on the issue would achieve "real progress" in helping member states coordinate their efforts.
"We need to listen to patients in order to develop policies that are patient-centred," she added.
The poll also highlights the problems patients suffer when it comes to access to care.
It says the average patient required more than nine different medical services over the two-year period preceding the survey.
Just over a quarter reported "difficult, very difficult or impossible" access to services; 16 per cent had to move house, usually to relocate to one better adapted to their health needs and 29 per cent had to reduce or stop work as a result of their disease.
The campaign is backed by EPP Antonios Trakatellis, a member of the environment committee and parliament's rapporteur on a council recommendation on rare diseases.
A rare disease is defined as a disease affecting less than one in 2000 citizens.
According to Eurordis, 6000 to 8000 rare diseases have been identified. They are life-threatening or chronically debilitating diseases and, due to their rareness, information is scarce.
The organisation used today's book launch and rare disease day on 28 February to call for better facilities for sufferers.
These include the establishment of rare disease national plans in each member state and the creation of 'centres of expertise' and European 'reference networks'.
"The creation of this physical or virtual networking of knowledge and expertise would provide the potential for a higher European added-value," said Eurordis chief executive Yann Le Cam.
"This policy can save thousands of lives each year and improve the quality of life of millions."
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