Thank you for raising this important matter following the PANS/PANDAS event in Brussels.
As Minister for Health I meet with patient advocacy and representative groups from time to time, including those suffering from rare diseases. In addition, officials in my Department, the HSE and CHI have regular engagement with patient advocacy and representative groups.
A very high volume of meeting requests are received by my office from patient advocates wishing to meet with me, diary schedule permitting.
My office has engaged with the group for further information arising from the meeting in the EU Parliament with a view to arranging a meeting with officials in the near future.