Documentation
Press release – Usher Syndrome Guidance for healthcare providers
September 2023
Video about Do’s and Don’ts!
Latest News
ERN-EYE, ERNs
First patients enrolled in REDgistry – July 2023
September 2023
As of July 2023, the first patients have been enrolled in REDgistry, after giving their informed consent.
ERNs
Introducing Together4RD’s newly published Position Statement on collaboration between ERNs and industry!
September 2023
ERNs, Events
Black Pearl Awards – It’s nominations time again!
September 2023
Publications
Publication in the Orphanet Journal of Rare Diseases
June 2023
Events
Replay of the webinar on Genetic Testing Strategies for Rare Eye Diseases
June 2023
ERN-EYE
Low vision Survey
June 2023
ERNs
ERICA Survey on ERNs and Clinical Research
May 2023
ERNs
Public Consultation on the Strategic Research & Innovation Agenda of the future European Rare Diseases Partnership
May 2023
The Strategic Research and Innovation Agenda of the RD Partnership is now open for public consultation.
ERNs, Events
EURORDIS Partnership Webinars: Rare Disease National Networks & ERN National Coordination Hubs
May 2023
ERN-EYE
Monitoring: Thank you to all ERN-EYE Full Members and Affiliated Partners!
May 2023
A total of about 20 700 new patients out of about 65 500 total patients were referred to ERN-EYE HCPs in 2022.
E-learning
Course “Development of Clinical Practice Guidelines”
May 2023