Medical encounters	YES	NO	UNCLEAR
Social service encounters	YES	NO	UNCLEAR
Misdiagnosis, mistreatment and/or late diagnosis	YES	NO	UNCLEAR
Retrieving information and/or use of internet in conjunction with the rare disorder	YES	NO	UNCLEAR
Patient organisations and/or social support from peers	YES	NO	UNCLEAR
Psychosocial implications in everyday life	YES	NO	UNCLEAR
Insufficient level of knowledge	YES	NO	UNCLEAR