Dáil Éireann Debate, Tuesday - 22 October 2013
527. Deputy Seán Ó Fearghaíl asked the Minister for Health if he will provide an update on the National European Rare Disease Plan; if glutaric aciduria type 1 will be placed on the list for newborn screening; and if he will make a statement on the matter. [44386/13]
View answerIreland 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. Ireland is now well advanced in this work.
In January 2011, EUROPLAN, the European Project for Rare Disease National Plan's Development, organised a national conference bringing together patients, patient organisations and healthcare professionals to discuss what might feed into the development of a national strategy for rare diseases.
A National Consultation Day for stakeholders was held in Farmleigh in June 2012. This was followed by an on-line consultation which elicited just under 500 valid responses. A report on both aspects of the consultation is currently being finalised by the Institute of Public Health. The Institute is playing an important support role in the development of the National Plan.
It is expected that the Steering Group will submit a plan to the Minister before the end of the year. It is intended to publish the Report on the Consultation alongside the publication of the Plan.
A proposal to include Glutaric Aciduria Type l in the National Newborn Bloodspot Screening Programme was presented to the Programme's Governance Group by Prof. Philip Mayne, Director of the National Newborn Screening Laboratory, Temple Street Hospital. This proposal is under consideration.
