Your Tag: Patient Public Involvement and Engagement (PPIE)

Black Pearl Awards

EURORDIS Black Pearl Awards to recognise rare disease community contributions in 2027

Established in 2012, the EURORDIS Black Pearl Awards recognise contributions across the rare disease community. The programme will return to Brussels and online on 15 February 2027.
Blueprint EU flag

European Blueprint sets out community priorities for a coordinated EU Action Plan on Rare Diseases

EURORDIS’ European Blueprint proposes 18 priority actions across six areas, offering a community-led foundation for a future EU Action Plan on Rare Diseases.
Engaging children, adolescents and young adults living with rare diseases as research partners: practical considerations for meaningful involvement

Engaging children, adolescents and young adults living with rare diseases as research partners: practical considerations for meaningful involvement

An International Rare Diseases Research Consortium (IRDiRC) working group developed practical guidance and a checklist for involving young people meaningfully in rare disease research.
ERDERA clinical trial call

Press Release | ERDERA Clinical Trial Call

ERDERA launches Clinical Trial Call 2026 to advance early‑phase clinical trials for rare diseases
Sveriges riksdag (house of parlament).

Sweden adopts first national strategy for rare health conditions

Sweden has adopted its first national strategy for rare health conditions, aiming to improve coordination, equity and access to care between 2026 and 2030.
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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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