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) |