On Monday the 11th of June, 2012 at 10am, the Department of Health's Consultation Day on a National Rare Disease Plan for Ireland took place at Farmleigh House in the Phoenix Park. This event followed the Minister for Health, Dr James Reilly's decision last April to appoint a National Rare Diseases Steering Group in order to develop a national plan for rare diseases. Similar plans are being drafted across the EU following a recommendation by the European Council of Health Ministers which requires Member States to implement national plans before the end of 2013. The launch of the online consultation process offers people with a rare disease and their families the opportunity to contribute to the formation of the plan. The online consultation process will last for four weeks and can be accessed by visiting http://www.hse.ie/eng/services/ysys/Consultation
Members of the National Rare Diseases Steering Group -
Prof Eileen Treacy, Health Service Executive, Ms. Caroline Kelly, Department of Health, Mr John McCormack, The Medical Research Charities Group, Ms Eibhlín Mulroe, The Irish Platform for Patients’ Organisations Science and Industry, Mr Tony Heffernan, Patient Representative (Bee for Battens, Dr Helen McAvoy, Institute of Public Health in Ireland. Minister of Health, Dr James Reilly TD, Ms Avril Daly, The Genetics Rare Disorders Organisation, Mr Owen Metcalfe, Institute of Public Health in Ireland, Dr John Devlin (Chair), Department of Health, Mr Shaun Flanagan, Health Service Executive, Dr Catherine Gill, Health Research Board.
Eibhlin Mulroe CEO, IPPOSI welcomes the Minister of Health to Farmleigh
Photographed: Lauren Shaw (age 8) from Clondalkin a patient with Friedreich's Ataxia, Minister for Health, Dr James Reilly T.D and Margaret Whealan a patient with Pompe Disease