Dáil Éireann Debate, Tuesday - 23 April 2013
580. Deputy Billy Kelleher asked the Minister for Health if he will ensure that the National Plan for Rare Diseases will be in place before the end of 2013 in view of the fact that it is required under the 2009 Council of the European Union recommendation on action in the field of rare diseases; and if he will make a statement on the matter. [18253/13]
View answerIreland has been supportive of the EU proposals on rare disease which concluded with the Council Recommendation in June 2009 to which the Deputy refers. The end point is that countries are recommended to develop plans or strategies preferably by the end of 2013. In 2011, I established a 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 five year period, take account of the Council Recommendation on Rare Diseases (2009) and define priority actions subject to resource availability. Since that time work has been progressing steadily on the development of the Plan. This has included a Consultation Event with stakeholders in Farmleigh last June followed by an on-line consultation. Work on the drafting of the plan is well underway and it is my intention to publish the Plan by the end of this year.
