Ireland has been supportive of the EU proposals on rare disease which concluded with a council recommendation in June 2009. The end point is that countries are recommended to develop plans or strategies preferably by the end of 2013. We are now well advanced in developing this work.
I established a National Steering Group, in April 2011, to develop a policy framework for the prevention, detection and treatment of rare diseases based on the principles of high quality care, equity and to be patient centred. The policy will operate over a 5 year period, take account of the EU Council Recommendation on Rare Diseases (2009) and define priority actions subject to resource availability. Similar plans are being drafted by individual countries across the EU, including in the UK. The National Steering Group identified a number of areas relating to rare diseases which it is currently considering including centres of expertise, access to appropriate medication and technology, orphan drug development, research and information and patient empowerment and support. In addition, the steering group consulted extensively with patients and key stake-holders in June and July of this year on the broad proposals and recommendations that will emerge.
