Aengus Ó Snodaigh (Dublin South Central, Sinn Fein)
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Question 68: To ask the Minister for Health if he will report on the progress and on the development of a National Plan/Strategy for Rare Diseases; and if he will make a statement on the matter. [16253/12]

James Reilly (Dublin North, Fine Gael)
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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.

In April 2011, I established a National Steering Group 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 Council Recommendation on Rare Diseases (2009) and define priority actions subject to resource availability. 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.

An integral part of an effective policy framework will be the development of a dedicated HSE clinical programme. A proposal has been submitted to the HSE's National Director of Clinical Strategy & Programmes to establish a National Clinical Programme for Rare Diseases. I understand that the HSE has agreed to establish such a programme, the details of which remain to be worked through.

In addition the steering group is planning to consult with patients and key stakeholders in early summer on the broad proposals and recommendations that will emerge.

It is expected that the steering group will submit a plan to me during the latter half of this year.