Pauline O'Reilly (Green Party) | Oireachtas source

I am going to speak about Rare Disease Day, which was mentioned by previous speakers, because it is important to do so. Even though 300,000 people in Ireland are obliged to deal with rare diseases, it is very difficult for individuals to advocate for any kind of intervention on their behalf. An alliance of the organisations involved is important. I am involved with Addison's Ireland. Very few people - the estimate is one in 100,000 - have Addison's disease. I am one of them. I would like to give a shout out today to Rachel Bracken, a volunteer who has done major work over decades in trying to get action for those who have Addison's disease. We are not in bad company in that JFK also had the disease, although he did not have it for long. One can lead a very active life if one has Addison's. People do not realise when it comes to the kind of care needed in order to save the life of an individual with the disease. Paramedics are very busy and do not always have all of the information to hand in this regard.That is a crunch point when people are being taken to hospital, namely, what will save their life in that particular instance. Unfortunately, we have see unnecessary deaths in our community. I am sure the same can be said for very many people with rare diseases.

Something that can be achieved quickly is the full implementation of the Mazars report published last Friday.  I thank the Minister for Health, Deputy Donnelly, for ensuring it was published. The alliance for rare diseases in Ireland has spoken to me, as I am sure it has to others, about how it feels this is a catalyst for change now in Ireland because it is a long road to try to get orphan drugs approved in Ireland. We cannot stand idly by when Ireland is a laggard in that regard.  I also thank Deputies Pádraig O'Sullivan and John Lahart for the work they have done.  I look forward to working with them as part of the working group on rare diseases.  I hope it will not be another year before we see some progress in rare diseases in Ireland.  We are all working tirelessly to try to do what we can for families.