Frances Black (Independent) | Oireachtas source

I thank the witnesses for coming before the committee.

It is incredibly distressing to hear about the reality of conditions for the 300,000 people living with rare conditions, and their access, or lack thereof, to essential services and supports. We know there are major shortcomings in our health system. The witnesses have touched on this, but in what ways has the Covid crisis affected not only delivery of care and services for patients with rare conditions but also genetic testing? The witnesses' statement referenced an exhausted and under-resourced system.

It was mentioned that despite the HSE indicating there should be 15, only three genetic consultants are in Crumlin. Crumlin is the sole provider of genetic testing and consultation in the country. It sounds like the Government failed to ring-fence money for genetic services. Is it due to internal disorganisation that our health system fails to recognise the importance of such services for rare conditions? It goes without saying the committee should write to the Department to flag this fatal shortcoming in our health system and demand we address and respond to it urgently.