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Tag: Rare Diseases

Ronald Cornet

“Data is the fuel of ERDERA’s mission to enhance our insights in rare diseases, to expedite diagnosis, and to find new treatments”

ERDERA interviews Ronald Cornet
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 

“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”

Triplet repeat expansion project sets benchmark for public-private collaboration

Triplet repeat expansion project sets benchmark for public-private collaboration

“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

ERDERA’s Networking Support Scheme opens to forge new rare disease and rare cancer alliances

ERDERA’s Networking Support Scheme opens to forge new rare disease and rare cancer alliances

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

World Health Assembly adopts first-ever resolution on rare diseases, signalling a new era of global collaboration

World Health Assembly adopts first-ever resolution on rare diseases, signalling a new era of global collaboration

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