Table 1.

Additional comments from 8 respondents to the statement “ERN-RND is the go-to source for information on rare neurological diseases in Europe”

Comment	Profile
For some rare diseases	Industry representative
Most ERN sites have great easy to follow information	Healthcare professional, patient (advocate)
Zu wenig bekannt und kein Zugang (translation: “not known enough and no access”)	Patient (advocate)
The networks are not generally known yet. Unfortunately	Patient (advocate)
It’s not the main source of information yet, but the awareness is increasing	Patient (advocate)
So many different websites!	Patient (advocate)
I didn’t know	Healthcare professional
As I'm member of Aisa (Ataxia Italian Association) here in Italy, I receive many infos already from them	Patient (advocate)