ADVOCACY

Covid-19 Helpline in Orphanet Journal

28/09/2020By

Patient involvement in ERN BOND Patient involvement has been an important principle in the European Reference Network for Rare Bone Disorders (ERN BOND) all the way from the start. Patient representatives are included in both the steering committee and the working groups of the network. OIFE and other patient organizations are consulted when further advice…

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EDUCATIONAL

EURORDIS DIGITAL SCHOOL

18/06/2020By

Today OIFE’s Communication Manager Anna Rossi attended EURORDIS Digital School, which takes place online this year. She has signed up for the entire Digital School 2020, which consists of webinars and eLearning and aims to empower rare disease patient advocates to use digital communication tools to improve the strategic outreach and community-building capacities of their…

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