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Survey for Patients. Let us hear your voice.

Survey for Patients. Let us hear your voice.
EventsPast Event

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

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Last News & Events

  • IRDiRC Diagnostic Scientific Committee Nomination Call
  • Treatable neurometabolic diseases – Recordati Rare Diseases Foundation course 6-8 October 2022
  • Innovation Bootcamp in Rare Diseases (IBRD2022) congress
  • International Neonatal Screening Day
  • 2023 EU4Health Stakeholders’ Event
  • SSIEM Annual Symposium 2022
  • Pregnancy and Family Planning in rare diseases: a survey for patients and clinicians
  • CPMS Success Stories – Our Metabolic team from the University Hospital of Santiago de Compostela

Activities

  • Publications and Guidelines
  • Unified Registry for Inherited Metabolic Disorders
  • Projects

Disclaimer

MetabERN is a European Reference Network (ERN) approved by the ERN Board of Member States.
The ERNs are co-funded by the European Commission.
For more information about the ERNs and the EU health strategy, please visit ec.europa.eu/health/ern
The content on this website represents the views of the network and is its sole responsibility; it can in no way be taken to reflect the views of the European Commission or any other body of the European Union.

For more information please contact
Prof. Maurizio Scarpa, MD, PhD
MetabERN Coordinator

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