Written answer
Disease Management
866. Deputy Keira Keogh asked the Minister for Health for an update on her Department's engagement with parents of children who they suspect suffer from PANS-PANDAS; the measures her Department is taking to develop guidelines; and if she will make a statement on the matter. [53347/26]
Comment on this
I thank the Deputy for raising this important matter regarding engagement with parents of children potentially suffering from PANS/PANDAS.
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.
However, I have asked relevant officials in the Department to engage with parents of children affected by PANS/PANDAS with a view to arranging a meeting with officials in the near future.