Publications
Latest News
ERN-EYE
WG1 Ontology follow-up meeting
ERN-EYE experts of the Retina gathered on 1st and 2nd February in Strasbourg.
ERN-EYE
Event on the SeeMyLife Research Project
The meeting provided an opportunity to assess the steps already taken and to discuss the objectives and challenges.
ERN-EYE
Educational videos to inform patients about clinical trials in rare eye diseases
Watch the series of videos created by the expert center RefeRet in Paris!
ERN-EYE
ERN-EYE 6th Scientific Workshop
ERN-EYE, the European Reference Network dedicated to Rare Eye Diseases, successfully concluded its 6th Scientific Workshop.
ERN-EYE
New ERN-EYE website
December 2023
Our new website is live, featuring a modern design and improved navigation on mobile devices.
ERNs
Open letter of the rare diseases community
October 2023
An open letter signed by all ERNs calling for a renewed and continuous support to the ERNs was published.
Documentation
Press release – Usher Syndrome Guidance for healthcare providers
September 2023
Video about Do’s and Don’ts!
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