EURORDIS - The Voice of Rare Disease Patients in Europe
The new Rare Barometer survey - H-CARE Pilot Survey - aims to develop a centralised patient feedback mechanism across the 8000+ rare and complex diseases and across the 24 European Reference Networks (ERNs)! This pilot survey, initiated by four European Reference Networks (ERKNet, ERN GENTURIS, ERN-LUNG - European Reference Network for rare respiratory diseases and eUROGEN) and supported by EURORDIS - European Rare Diseases Organisation, will test the development of this common patient feedback mechanism across Europe for all rare diseases. It will run until February 29th, 2020, so if you are a patient with a rare or complex disease (or member of their family and/or caregiver) make your voice heard now! ? Access the survey here ➡: https://www.sphinxonline.com/SurveyServer/s/EURORDIS75/H-CARE_interface/questionnaire.htm And learn more about it here ➡: https://www.eurordis.org/guidelines_hcaresurvey ... See more
