GENERAL MEDICINE
Rare diseases plan published
July 3, 2014
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A plan to deal with rare diseases in Ireland over the next four years has been launched by the Minister for Health.
According to Dr James Reilly, the National Rare Diseases Plan for Ireland 2014-2018 provides ‘a roadmap for the prevention, diagnosis and treatment of rare diseases'.
A rare disease refers to any disease or disorder that affects less than five people in every 10,000. It is estimated that there are over 6,000 identified rare diseases and many of these can be severe and debilitating.
The National Plan makes a number of key recommendations, including:
-The establishment of a National Office for Rare Diseases - this would facilitate the coordination and timely access to national and international centres of expertise. It would also provide the latest information on treatment and management options, including clinical trials
-Residential respite care to be made available to children with rare diseases
-The development of a rare disease research network to enhance the quality of research in Ireland
"The publication of this plan is against the backdrop of major reform of our health service, reform that will deliver better access to high-quality health services. I fully endorse this plan as the means to positively shape how we look after people with rare diseases in Ireland," Minister Reilly commented.