John Gilroy (Labour)

I welcome the Minister of State to the Chamber. I am glad that we can discuss this topic today. By its very definition it is a topic that does not often get a public airing. Those who do talk about it are the victims of rare diseases, as well as their families and support groups. It must be frustrating to find oneself with a serious condition and be isolated as well. It is important to discuss this issue and I commend Senator Colm Burke and the Fine Gael group on bringing it to our attention. The Seanad is a good venue to debate such a topic. I cannot think of any other public forum where such an issue could be discussed.

It is problematical to discuss rare conditions as a homogenous group. The motion refers to 7,000 different individual conditions which are classified under this heading. With such a diverse number it is difficult to know where to start discussing them. Even the way we count them - from 5,000 to 7,000 - could mean that there are 1,500 more conditions, or fewer, than we recognise under this heading. That is certainly problematic.

The conditions vary from contractible and acquired to genetic, and leave little ground to find commonality, especially for a lay person like myself. I am, however, not entirely a lay person in this regard having spent 30 years working as a psychiatric nurse. I worked in St. Pancras Hospital in north London near King's Cross, which is the national hospital for tropical diseases. There were two psychiatric wards where I worked. From time to time because of the nature of some of the tropical diseases that were presenting to the hospital, there was a requirement for some mental health nurses to work on these wards. The extraordinary variety of conditions under that heading alone that presented to the hospital almost overwhelmed the system.

On one occasion, I came across a young man who suffered from a condition which I will not name because it is such a rare disease. When he was diagnosed with it he was allocated a number for tracking through the system. His number was 23, meaning there were only 22 other such cases in the whole world, which was remarkable.

In order to develop and maintain an expertise in medical specialties there is a requirement that a certain number of cases will be seen at any centre. It is accepted medical practice to ensure that such expertise is maintained. It is difficult to know how this can be achieved in this area, but we can certainly ensure an adequate flow of information between hospitals, countries and continents. Co-operation across Europe and further afield is vital in this regard.

I acknowledge the wonderful work that has been done by support groups as well as by the families of sufferers. They are often the silent heroes in this area. Perhaps the Government will be able to do a little bit more to support such groups. The steering group established by the Minister for Health, Deputy James Reilly, is a welcome development which points to the vital necessity of sharing information.

This debate is most welcome and I again commend Senator Colm Burke and the Fine Gael group on initiating it. The Minister, Deputy Reilly, and the Minister of State, Deputy Shortall, are also to be commended on their proactive stance on this matter.

I wish to re-emphasise the importance of sharing information to ensure that the best clinical outcomes are achieved for sufferers of all rare diseases.