Martin Conway (Fine Gael) | Oireachtas source

Today is International Rare Diseases Day. It is a day when we reflect on what we have done as a society to help people who have rare diseases. Unfortunately, we are behind the curve yet again this year when it comes to rare diseases. It takes a third longer for people in Ireland with rare diseases to access drugs that have already been sanctioned and approved by the European Medicines Agency. It takes a third longer for people who have unique, different diseases to access orphan and new medicines that could be life-changing.That is not acceptable. Why is that, year on year, we continue to lag behind our European colleagues when it comes to accessing new drugs, orphan drugs and drugs that have already been approved by the European Medicines Agency?

We need a debate on this issue. We also need for the Committee on Health to hold a debate on rare diseases. Previous health committees have made recommendations and those recommendations have not been implemented.

Rare diseases are challenging, particularly regarding children. They are frightening for parents. We need an awareness-raising campaign. We need to put rare diseases front and centre. We need to shine a spotlight on the issue. I am calling for a specific debate focused on rare diseases. I would like to see that debate scheduled with the Minister for Health, Deputy Donnelly, in the coming weeks. I would like to see it take place before we break for the summer recess in July. That should give enough time to be able to schedule it with the Minister.