Tag: Living with Rare

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
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

Sofie Skoubo

“If we can remove some of the barriers to accessing education—both visible and invisible—then we could support people with rare diseases in the right way”

“I hope ERDERA solidifies the mindset that no single group—be it clinicians, patients, researchers, public authorities, or private entities—can succeed alone” Alexandre Mejat

“I hope ERDERA solidifies the mindset that no single group—be it clinicians, patients, researchers, public authorities, or private entities—can succeed alone”

“Knowing there’s a place where someone will listen, understand, and guide you towards what’s best for your child is invaluable

“Knowing there’s a place where someone will listen, understand, and guide you towards what’s best for your child is invaluable.”

ERDERA's

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