Jonathan O'Brien (Cork North Central, Sinn Fein)
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Question 38: To ask the Minister for Health the progress, if any, made on proposals for establishing a national centre for rare diseases and a national plan for rare diseases; and if he will make a statement on the matter. [24215/12]

James Reilly (Dublin North, Fine Gael)
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The current priority for my Department in relation to this issue is focussing on the development of a national plan for rare diseases. 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. The HSE has agreed to establish a National Clinical Programme for Rare Diseases which aims to improve and standardise patient care by bringing together clinical disciplines and enabling them to share innovative solutions to deliver greater benefits to HSE service users. I understand that arrangements are currently being made by the HSE to put in place management and clinical leads for the new programme. The HSE expects to finalise these arrangements in the short term. In addition the steering group is planning to consult with stakeholders on the 11th of June next regarding progress to date and preparation for the final phase of the plan's development. I expect the plan to be submitted to me later this year.