Inclusive Involvement: Practical Steps You Can Take Today

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A Friendly Guide to Equality, Diversity & Inclusion (EDI) Equality, Diversity & Inclusion (EDI) Equality, Diversity & Inclusion (EDI) in Public and Patient Involvement (PPI)

This guide is about turning the ideas of equality, diversity, and inclusion (EDI) into practical action. We wanted to move beyond theory and show what you can actually do to make public and patient involvement (PPI) in research more welcoming and enjoyable for everyone.

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ERDERA (the European Rare Diseases Research Alliance) has opened its Clinical Trial Call to support multinational early-phase clinical trials in rare diseases. The call will fund studies designed to generate robust clinical evidence, strengthen regulatory readiness and make rare disease trials more feasible across countries.
On 3–4 June, EURORDIS–Rare Diseases Europe and Orphanet convened the rare disease community at ECRD 2026 in Prague around a shared call for coordinated European action, including the forthcoming European Blueprint for Rare Diseases.
The 2026 Open Academy x ERDERA Schools in Barcelona brought patient advocates and early-career researchers together for practical training on medicines development, translational research and meaningful participation in rare disease research.
Sweden has adopted its first national strategy for rare health conditions, aiming to improve coordination, equity and access to care between 2026 and 2030.