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3 materials found

Difficulty level: Beginner 

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Target audience: Patient Advocates  

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Resource type: e-learning 


Eurordis Open Academy

Through the Open Academy, EURORDIS empowers patient advocates to have the confidence and knowledge needed to bring their expertise to discussions on health care, research and medicines development. EURORDIS alumni engage in these discussions as equal partners, side by side with policy makers,...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research, Rare Diseases

Resource type: course materials, e-learning

Patient-Centered Outcomes Research Institute (PCORI) Training : A Program for Rare Disease Patient Advocates

In response to rare-disease patients’ desire to make research more meaningful to their community, PCORI created an online Program for Rare Disease Patient Advocates.

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: educational materials, e-learning

Findacure's e-learning resources on rare diseases

The portal is aimed at rare disease advocates, patient groups and charities, though anyone with an interest in rare diseases or advocacy is welcome to sign-up. It is completely free to use, and users are encouraged to contact Findacure with suggestions for new content.
The portal shares ‘how to’...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, Video, Presentation, Training materials, e-learning