Dáil Éireann Debate, Tuesday - 19 November 2013
698. Deputy Thomas P. Broughan asked the Minister for Health if EU Council recommendation of 8 June 2009 on an action in the field of rare diseases (2009/C 151/02) is being implemented by his Department and the Health Service Executive in regard to Ehlers-Danlos syndrome. [49415/13]
Amharc ar fhreagraMy 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 councils 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.
