Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein) | Oireachtas source

I joint the Vice Chairman in welcoming the panel this morning. We have a number of sessions here today, but the written and oral submissions Ms Towey and Dr. Pender have made have had a huge impact, certainly on me personally and, I have no doubt, on my colleagues on the committee. It does not take a great deal of analysis for us to realise just how devastating this diagnosis must be. All four panel witnesses by their respective contributions have made that abundantly clear.

There can be no question as to the need for the committee to reflect this directly to the Minister, the Department and the HSE. This is a diagnosis that could present in anyone's life. I note that Dr. Pender indicated that approximately 700 families are affected. Of course, with a 50% chance presenting, that could expand exponentially. There is no question about that. How many people are directly affected? How many people does that translate into? Forgive me for having returned a little late from the vote, but I did not hear the earlier part of Dr. Pender's presentation. Is it the case that the diagnosis is reflective of particular points in the development of life and age groupings? The manifestation of the symptoms is in later life, I understand, but Dr. Pender can correct me if I am wrong. The diagnosis can be made even though the symptoms have not yet presented. I do not want to cause any upset, but are there clusters in certain parts of the country and areas where the disease is more prevalent? If so, are there obvious explanations for this?

In relation to the work of the Huntington's Disease Association of Ireland, or HDAI, the health canvas is huge as we have noted already today. I can only imagine that the role of the HDAI is crucial in supporting these families and individuals.

I am concerned about the difficulties the HDAI may have in carrying out its work. Can Ms Towey tell me what is currently provided by State subvention and support? The association is the national resource centre for people impacted by Huntington's disease. Does it translate into a physical structure? Is there outreach work? Do people work in a centre? Can people go to a building or structure? I want to hear about a more expanded profile of the HDAI.

There are existing sites in Dublin, Cork and Galway and the association has proposed that these are developed in terms of multidisciplinary provision and supports. Can the delegation list areas that should be prioritised? Should neurology and psychology services be prioritised? Please give us a sense of the association's priorities. I appreciate that these things are required. I want the critical deficiencies at this moment in time identified and prioritised.

Does the HDAI have a corresponding organisation north of the Border? If so, what is the extent of its engagement with same? There are clinics or existing sites which offer support in Dublin, Galway and Cork. In terms of the rest of the island, is there a similar facility in Belfast? Is there more than one such facility? I am unaware of that detail. Is there any level of interaction, co-operation or supports that could be enhanced through greater co-operation between North and South? This committee will travel, in a short number of weeks, to meet its counterparts in the Northern Ireland Executive. That is why I want to learn what further impact we could make, not only here in this institution but to share it with elected colleagues, of all opinions, north of the Border.

I shall leave it at that. I sincerely thank the witnesses who came before us this morning to discuss Huntington's disease.