ADVOCACY

OIFE at Open Academy in Barcelona

The EURORDIS Open Academy accompanies patient advocates by offering rare disease-specific comprehensive training programmes that empower advocates with the knowledge, skills and confidence they need to engage with different stakeholders as equal partners. Their schools, supported by ERDERA, offer a blended learning approach that includes e-learning courses, webinars, in-person training, as well as research visits and networking…

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STORIES

Athletes without Permission

Our Polish delegate Aneta is planning to write an eBook about good examples from people with OI living in Europe who are physically active in different ways. Aneta herself has OI type IV and has tried many different sports and activities: swimming, scuba diving, crossfit and climbing. The project has the working title “Athletes without…

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