Category: Patient Involvement (PPIE)

Applications for Open Academy Schools 2026

Patients as Equal Partners – ERDERA’s PPIE Vision Echoes in Brussels

“ERDERA could become a model of how to align large-scale, cross-border research with real patient needs, so that the knowledge gained is translated into tangible benefits”

Erdera interviews Tomasz Grybek, patient representative and caregiver

Rare Disease Community | Tomasz Grybek

Rare Disease Community | Tomasz Grybek

Members of the global rare disease community gather in Barcelona for hands-on training

“There’s a lot of value in connecting with other countries — learning what has worked, what hasn’t, and applying those lessons”

“The National Mirror Group was the first time patients had been treated as equal partners in this kind of forum, and it immediately changed the conversation”

Open Academy Schools 2025: High engagement, deeper impact

ERDERA launches survey to put rare-disease patients at the heart of research

World Health Assembly adopts first-ever resolution on rare diseases, signalling a new era of global collaboration