MetabERN is a European non-profit networkestablished by the EU to facilitate access to the best available care and address the needs across the border of all patients affected by any rare inherited metabolic disease(IMDs) and their families. MetabERN is driven by the principle of patient-centred care for the provision of its services aiming at improving the quality of life of patients and families.
A patient survey has been created to help understand what are patients’ needs. The survey has been translated into 7 languages.
English: Survey on the needs and expectations of patients: https://www.surveymonkey.com/r/PJSVZJL
French: Questionnaire sur les besoins et les attentes des malades: https://www.surveymonkey.com/r/BC9Z8G7
Portugese: Questionario sobra as ERN: necesidades e expectativas dos pacientes : https://www.surveymonkey.com/r/5SKLJFW
Norwegian: MetabERN–spørreundersøkelse for pasienter :https://www.surveymonkey.com/r/5WGJTLZ
German: MetabERN Patientenfragebogen Bedürfnisse und Erwartungen von Patienten https://www.surveymonkey.com/r/5WLJ2Z9
Dutch: Vragenlijst over de behoeften en verwachtingen van patiënten: https://www.surveymonkey.com/r/M3TQ63M
Italian: Questionario sui bisogni e le aspettative dei pazienti: https://www.surveymonkey.com/r/BJYBQWX
