Dr. John Devlin:

On Deputy Ó Caoláin's question, I am aware that the Rare Disease Patient Organisations appeared before the committee a couple of weeks ago. I take this opportunity to mark their contribution not only in terms of the steering group but also in terms of the public consultation process. There have been two national consultation days and some online consultation. Their input into that has been very valuable in terms of assisting us in completing our report.

The establishment of a national office was highlighted during that consultation process. There are currently approximately 8,000 rare diseases. There is lack of strong clinical focus in this regard on behalf of patients and families. There is also difficulty in accessing information and all that entails. We know that the model of a rare disease office works well in other countries. In response to the Deputy's question, this issue is a strong feature of the report. In terms of where we are at, the final meeting of the national steering group will take place next week. Subject to that, and all things going well, we will make a recommendation to the Minister. This will be done by way of publication of our report, which will then be presented to the Minister, alongside the consultation document. Publication of the report is imminent. The issue is being addressed seriously within that report.