Rare disease liaison officer
Deputy O'Sullivan sought clarification on the rare disease liaison officer and related contact details. The Taoiseach said he would obtain the specific information and return to the Deputy in coming days.
I wish to raise the issue of rare diseases. I have a number of questions and would appreciate it if the Taoiseach's office could come back to me on them. The first concerns the current rare disease liaison officer. Could the Taoiseach clarify whether he or she is on leave from the Department of Health and is likely to be replaced? Has there been an appointment or even an interim arrangement or other arrangement? Could the Taoiseach please clarify that by way of a supplementary response? Could he provide the contact details for the person in question and his or her office?
The current rare disease plan has expired, as the Taoiseach knows, and there is a successor plan. To be fair, it has been announced by the Minister for Health, which I welcome; however, at the same time, the vast majority of the recommendations made under the previous plan have not been implemented. I ask for urgency in implementing as many of those recommendations as possible before the successor plan is implemented. Could the Taoiseach provide people with the timeline and meet the targets?
Comment on this
I commend the Deputy on his ongoing and consistent interest in rare diseases and orphan drugs. He always makes sure these matters do not slip off the agenda. He asked some very specific questions to which I do not have answers but I will make sure he gets the information he needs in the coming days.