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Your Category: Patient Public Involvement and Engagement (PPIE)

ECRD 2026

ECRD 2026 in Prague strengthens the push for a coordinated EU Action Plan on rare diseases

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.
ERDERA Open Academy 2026

Open Academy x ERDERA Schools in Barcelona strengthen practical links between patient advocacy and rare disease research

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.
Open Academy

Open Academy x ERDERA Schools return to Barcelona to strengthen rare disease research participation

From 25–28 May in Barcelona, the EURORDIS-led Open Academy x ERDERA Schools will bring patient advocates and early-career researchers together for four days of rare disease training, exchange and peer learning.
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NIHR Children and Young People Health Research Centre (NIHR HRC-PCH)

Children, Young People and Family Involvement and Engagement Strategy 2024-2029
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Public Involvement in Research Impact Toolkit (PIRIT)

Public involvement positively shapes research. By sharing their time and personal experiences with researchers, members of the public can influence what research takes place, how it’s carried out, and how the results are shared.
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The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it?

As public involvement in the design, conduct and dissemination of health research has become an expected norm and firmly enshrined in policy, interest in measuring its impact has also grown. Despite a drive to assess the impact of public involvement, and a growing body of studies attempting to do just this, a number of questions have been largely ignored.
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Learning as an outcome of involvement in research: what are the implications for practice, reporting and evaluation?

Public involvement in research has evolved over the last two decades in a culture dominated by the principles of evidence-based medicine.
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The impact of involvement on researchers: a learning experience

The impacts of involvement in research are often described in terms of the difference made to the research, the people involved and less frequently the researchers.
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Evaluating public and patient involvement in interventional research–A newly developed checklist (EPPIIC)

Public and patient involvement (PPI) has been identified as an increasingly desired and, often, required component of trial methodology–leading to higher quality, more accessible and relevant clinical research.
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Strategies for diversity and inclusion in public involvement

Supplement to the briefing notes for researchers
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