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Tag: National Mirror Group

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
“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”

Europe’s rare-disease alliance charts next steps at Riga workshop

Europe’s rare-disease alliance charts next steps at Riga workshop

New survey aims to give under-represented countries a stronger voice in rare-disease research

New survey aims to give under-represented countries a stronger voice in rare-disease research

EU rare disease conference concludes in Warsaw with renewed focus on early diagnosis and collaborative research

EU rare disease conference concludes in Warsaw with renewed focus on early diagnosis and collaborative research

Rare Disease conference kicks off in Warsaw

Rare Disease conference kicks off in Warsaw: Building momentum for a unified EU strategy

Rare disease experts to gather in Warsaw to shape Europe’s future strategy

Rare disease experts to gather in Warsaw to shape Europe’s future strategy

Daria YT

Rare disease day 2025: ERDERA charts the path forward in collaborative research

Transforming Rare Disease Research in Europe

ERDERA: Transforming Rare Disease Research in Europe