Dr. Ciara Martin:

The definition of a rare disease can vary across different countries because something that is rare in Ireland may not be rare somewhere else. A rare disease is a very specific disease that affects a very small population and is so rare that it is very difficult, as was said, to get easy diagnosis and support. It is a difficult disease to get enough people to research. As I said earlier, if we are talking about doing a trial for which we need 200 people, we may not have 200 people with this disease across the world. It is something very rare and that is why it needs special recommendations around it.

The definition of a rare disease is very broad, but it can feel very isolating for a family or patient with it because they are faced with something they do not have a community or network around. They do not have a group of people who can meet Deputies or even lobby for what they need. That is why it takes us, the Department and the rare disease organisations to say to people that while they may have a rare disease, we understand what that means and we will work with the family and anybody who has an interest in this, whether it is in Ireland or another country in Europe, to try to get the best care and advice they need and, if there is any treatment out there that is being proposed, we will work with other communities to get research. Does that help?