Tag: ERDERA

Triplet repeat expansion project sets benchmark for public-private collaboration

A first in personalised medicine: CRISPR treatment for a baby sparks new debate on rare disease therapies

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ERDERA Clinical Research Network Jamboree: Including underrepresented countries into innovative diagnostic research

Erdera Open Session 1-1

Join ERDERA’s Open Session on 30 October and get inspired by leading voices in rare disease research 

Erdera Open Session 1-1

Join ERDERA’s Open Session on 30 October and get inspired by leading voices in rare disease research

International Patient Organisation for Primary Immunodeficiencies IPOPI

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

Daria Julkowska ERDERA Science Webinar

Scientific Coordinator Daria Julkowska contributes to Science Magazine and Ipsen Foundation’s high-level webinar on rare disease research collaboration 

Triplet repeat expansion project sets benchmark for public-private collaboration

Triplet repeat expansion project sets benchmark for public-private collaboration

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”

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

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