Tag: Rare Diseases

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

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

Unveiling fresh data from a survey of 32 European rare-disease plans
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

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