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Difficulty level: Beginner 

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Target audience: rare disease patients repr... 

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Resource type: e-learning  or Computer Software 


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