Latest news

by Serena Bartezzati, ePAG Representative Knowledge generation and dissemination is a key objective of the ERNs.  The Working Group (WG) on Knowledge Generation aims to create a common ERN...

ERN eUROGEN held their annual Strategic Board Meeting using virtual conferencing on 12 June 2020, despite the unprecedented global situation with the COVID-19 pandemic.  Over 50 network members attended,...

I am looking forward to starting as Coordinator of the ERN eUROGEN Registry. It will be a challenge to set this up and find a good balance between the...

I am very excited to start work with ERN eUROGEN and get familiar with the ERN and Clinical Patient Management System (CPMS) so I can be of help.  I...

As my job title suggests I am responsible for supporting and managing the aspects of ERN eUROGEN’s business which keep the network running. This covers administrative tasks including coordinating...

My primary role is to help our network clinicians get their difficult patient cases uploaded to the Clinical Patient Management System (CPMS) for discussion with other experts and also...

My main focus is on ensuring the network is active, working together as a team, and that we are delivering.  I help out with the Monitoring Working Group (eUROGEN...

We look forward to welcoming representatives from our Full Member / Affiliated Partner Healthcare Providers, our ERN Patient Advocacy Groups, and our Supporting Partners to our virtual Strategic Board Meeting on...

The commentary ‘Boosting delivery of rare disease therapies: the IRDiRC Orphan Drug Development Guidebook’ has been published in Nature Reviews – Drug Discovery. This guidebook, which has been authored...