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Publication in the Orphanet Journal of Rare Diseases
Our abstract on “ERN‑EYE GOOD PRACTICES SERIES: Do’s and don’ts on Usher Syndrome” submitted after the European Conference on Rare Diseases (ECRD) 2022 was published in the Orphanet Journal of Rare Diseases on Friday, 2nd June!
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Replay of the webinar on Genetic Testing Strategies for Rare Eye Diseases
Did you miss ERN-EYE webinar on Genetic Testing Strategies for Rare Eye Diseases? Don’t worry, it’s available as a replay!
ERN-EYE webinar (5 June 2023) – Genetic Testing Strategies for Rare Eye Diseases
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Low vision Survey
The ERN-EYE Transversal working Group 5 created a survey to get an overview of existing low vision services in Europe. This questionnaire takes 15 to 20 min to complete. The TWG5 would be very thankful for your precious contribution.
News
ERICA Survey on ERNs and Clinical Research
ERICA is launching a survey to collect information on the status quo of ERNs and Clinical Research. It is developed by ERICA WP4 on Clinical Trials on the basis of the previous survey delivered in 2018. The results of the two surveys will be compared to provide a more comprehensive state-of-the-art of ERNs…
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Public Consultation on the Strategic Research & Innovation Agenda of the future European Rare Diseases Partnership
The Strategic Research and Innovation Agenda of the RD Partnership is now open for public consultation.
News
EURORDIS Partnership Webinars: Rare Disease National Networks & ERN National Coordination Hubs
EURORDIS held a webinar on 4th May 2023 on “Rare Disease National Networks & ERN National Coordination Hubs”. The replay is now available.
Newsletter May 2023
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Monitoring: Thank you to all ERN-EYE Full Members and Affiliated Partners!
A total of about 20 700 new patients out of about 65 500 total patients were referred to ERN-EYE HCPs in 2022.