Dáil Éireann Debate, Thursday - 13 February 2014
34. Deputy Thomas P. Broughan asked the Minister for Health further to Parliamentary Questions Nos. 698 and 699 of 19 November 2013, the status of the drafting of a rare diseases plan as required under European Council Recommendation 2009/C/151/02 of 8 June 2009 on an action in the field of rare diseases. [6696/14]
View answer47. Deputy Thomas P. Broughan asked the Minister for Health if research will be carried out into the prevalence of Ehlers-Danlos syndrome here to guide the provision and allocation of necessary supports and services to children and adults affected by this condition. [6697/14]
View answerI propose to take Questions Nos. 34 and 47 together.
My Department is finalising a national plan on rare diseases which is set in the context of the council recommendation of 8th June 2009. While no specific rare disease is mentioned, the council decision declared that it is estimated that there are between 5,000 and 8,000 rare diseases; and hence it states that the specificities of rare diseases are:
- A limited number of patients and;
- A scarcity of relevant knowledge and expertise.
The council's decision recognised these specificities when it recommended that member states adopt a plan to guide actions in the general field of rare diseases. It is with this in mind that my Department is finalising a generic plan to apply to the 8,000 rare diseases - including Ehlers Danlos Syndrome - estimated to exist. An essential element of this plan is addressing broad epidemiological surveillance of rare disease in Ireland as an absence of such surveillance hinders - among other things - appropriate health and social service commissioning, and work-force planning.
