Category: Patient Involvement (PPIE)

World Orphan Drug Congress

ERDERA, RealiseD and INVENTS to lead workshop at WODC Europe 2025

Less than a month to the World Orphan Drug Congress Europe.
XVII Foresight Training Course

XVII Foresight Training Course | From research to access: how does Europe speed up the availability of medicines for unmet needs?

The course will focus on the current status and advancements of clinical research especially to address unmet medical needs. Innovative methodologies, regulatory challenges, and the involvement of adolescents in clinical trials will be discussed.
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

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”

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