Mr. Tony Heffernan:

We are talking about the provision of services in dealing with rare diseases and symptom management. The symptoms of many of those affected by rare diseases are common and similar to those affected by common conditions; therefore, they can be managed in the same way. We must consider what is happening now. The State relies on families and carers to look after all those affected and most of them receive no financial benefits. The least the State could do is give them a break, by means of respite care and additional support. This would them give them a better future in terms of their mental health and also support the families directly. We have to take a proactive approach to supporting them while all of the other work is continuing.