The National Rare Disease Plan 2014 – 2018, published this month, outlines proposals for a new clinical care programme specifically for the treatment of rare diseases, which affect an estimated 6 to 8 per cent of people in their lifetime. Illnesses which affect fewer than five people in every 10,000 are considered “rare diseases”, with about 8,000 identified in Ireland.

Speaking at the launch Minister for Health James Reilly stated that a new plan for the treatment of rare disease in Ireland should lead to faster diagnoses, improved access to care and better support for patients and their families.

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Some of the recommendations include the establishment of a dedicated national office for rare disease which would coordinate access to medical expertise and provide information to patients and medical practitioners about new treatments and clinical trials and for the development of a rare disease research network to enhance the quality of research in Ireland.

Click here for some press coverage on the launch.