Strategies for diversity and inclusion in public involvement

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Supplement to the briefing notes for researchers

This supplement provides ideas and information to support the involvement of a wide range of people in research and to identify ways to reach out to members of the public who do not often get involved in research.

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At the “Advancement of Treatments for Rare Diseases” conference in Nicosia, European and national policymakers joined clinicians, researchers, regulators, industry representatives and patient advocates to examine how stronger coordination can translate scientific progress into better prevention, diagnosis, treatment and access to care for people living with rare diseases.
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The Open Academy x ERDERA 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.
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This webinar will present a theoretical framework for situating ethics across research activities. The framework will then be brought to life through a relevant case study discussion, giving participants a concrete reference point for the episodes ahead.