Dáil Éireann Debate, Tuesday - 25 February 2014
669. Deputy Kevin Humphreys asked the Minister for Health the position regarding the provision for primary immunodeficiencies in the national plan for rare diseases; and if he will make a statement on the matter. [9252/14]
View answerMy 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 estimated to exist.
The HSE has established a National Clinical Programme for Rare Diseases (NCPRD); a National Clinical Lead has been appointed and a programme manager is in place. Part of this work will address care pathways for patients with rare diseases.
