This matter has been raised twice already this morning, but it is hugely important. I will make a personal appeal to the Taoiseach regarding Skyclarys and the further delay that has now arisen. Yesterday, Emma O'Shea came to Leinster House from west Cork with her mother, father and brother. I am in regular contact with Emma, but seeing her here again yesterday fighting courageously for a medication that could help to slow the progression of this cruel disease had a profound impact on me and my staff. Emma is just 26 years of age and is now confined to a wheelchair. Her family knows all too well the reality of Friedreich's ataxia because Emma's brother died from this disease. Last night when Emma got back to west Cork and learned there would be yet another delay, she sent me a text message. Her words were simple: "It is a joke. I am heartbroken". Every day matters for Emma. Every delay means more deterioration, more uncertainty and more fear.

I am not hear to blame the Taoiseach. I am asking the Taoiseach to get personally involved and to put the full weight of his office behind this issue. I hate to be so blunt, but what happened to Emma's brother cannot be allowed to happen to Emma-----

Thank you, Deputy.

------because of delays. I urge the Taoiseach to please do everything in his power to get this medication across the line.

Time is up, Deputy.

Emma's family and other families like them simply do not have time to wait.

I thank the Deputy for raising the situation and how it personally impacts on Emma O'Shea from west Cork. Well over 200 families are impacted by this rare condition. It is particularly high in Ireland in comparison with other locations. I accept fully the impact and trauma on Emma's and other families. The Minister is doing everything possible to progress the issue and get the group established.

There is a broader issue about the assessment of new drugs and how we do that. We have to have a scientific dimension to it and a proper rigorous evaluation of the efficacy of drugs. I think that is accepted. Over 70 drugs for rare diseases have been approved in the last four years, so we do approve drugs for rare diseases-----

Thank you, Taoiseach.

-----as per the exiting process that is laid down in legislation. However, I take the Deputy's overall point.