Ms Vicky McGrath:

I might come in on the plan or strategy and ask Dr. Lynch to respond to the genome sequencing question. In any plan or strategy, we need to look at the person in his or her entirety. We developed a plan in 2014 that looked just at the health aspects. It is clear from what Ms Daly said that the impact is on the entire person and his or her family. It is not just about the medical needs of the individual but also about his or her ability to partake in education and employment and live independently. We need a plan, therefore, that encompasses all these elements of the person.

Ms Daly eloquently provided details from the European study, Rare 2030, which is looking forward to 2030 and considering the priorities. None of those priorities has been resolved in this country, and that is where we need to go. We need to look at the entire system and how we can integrate with Europe and develop a system that meets the needs of the entire rare disease person, not just his or her health needs.