The pfapa facebook page is attempting to gather location information on PFAPA patients to look at spatial distribution. I have attached a link to the survey here for those not on the facebook page.
The survey asks for where you are located, how many children you have affected, and how many children you have total. There is also a couple questions on treatment that has been used, these are all western medicine options but there is a spot to enter in other treatments. The survey does not collect any other information than what you provide to the form.
Please take a moment to complete the survey. I will make sure the results are posted here.