David Cullinane (Waterford, Sinn Fein) | Oireachtas source

We have a national plan that has not been updated for eight years. There is a commitment to update it. Perhaps a note could be sent to the committee on precisely how that will happen, if there are indicative timeframes, who will lead, what role there will be for patient organisations and so on. The committee can then consider how we can help in that process.

Mr. Woods stated that funding will be sought in the Estimates process to support the five hospital sites involved in the European reference networks to set up their rare disease registries and to support clinicians to participate in research. That is good and welcome. We need to consider the development of care pathways to allow for patients to access expert care in other EU countries. Funding would have to be provided for that. Could that also be considered? Will that be sought in the same Estimates process?