Category: Patient Involvement (PPIE)

ERDERA group photo from the workshop

Multi stakeholder workshop advances prioritisation of rare diseases for ATMP development

A practical framework in the making
Collaboration - Open Academy Schools 2025 High engagement, deeper impact

Applications for Open Academy Schools 2026

International Patient Organisation for Primary Immunodeficiencies IPOPI

Patients as equal partners – ERDERA’s vision echoes in Brussels

Tomasz Grybek

“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
Tomasz Grybek

Rare Disease Community | Tomasz Grybek

Rare Disease Community | Tomasz Grybek
ERDERA training

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”

“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”

“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”

Collaboration - Open Academy Schools 2025 High engagement, deeper impact

Open Academy Schools 2025: High engagement, deeper impact

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

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

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