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EXPLORE XLRP 2
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7th General Annual meeting of ERN-EYE
ERN-EYE organised its 7th General Annual Meeting from March 23rd to 24th in Ljubljana, Slovenia. It gathered nearly 100 people from the HCPs of 18 member states of the network, as well as invited speakers. The ERN-EYE Team Hôpitaux Universitaires de Strasbourg, FranceWebsite: www.ern-eye.eu
Pr David Keegan, representative of the ERN-EYE Ireland Consortium (EEIC)
Newsletter March 2023
News
New video from Rare Diseases International: what is a rare disease?
What is a rare disease? How many people live with a rare disease? Why do Persons Living with a Rare Disease and their families require specific attention? Rare Diseases International (RDI) has released a video illustrating its operational description of rare diseases. It is an internationally agreed definition that explains what rare…
News
EJP-RD‘s new video explaining the Rare Diseases National Mirror Groups
Do you want to learn about the connection between the expertise and knowledge from the Rare Diseases Community of a specific country with the EJP RD countries?
News
Black Pearl Awards 2023
The 12th edition of the Black Pearl Awards took place on 21st February 2023 in Brussels, Belgium. The event brought together hundreds of persons living with a rare disease, patient advocates, policy makers, including representatives from the European Parliament and Commission, scientists, healthcare professionals, industry representatives, and more from all…
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Neuro-ophthalmology working group meeting
The Spanish members of the ERN-EYE working group 2 on neuro-ophthalmology met on 30th January. 19 people took part in the meeting.
News
New paper from ERN-EYE members
A paper called “Current management of Inherited Retinal Degenerations (IRD) patients in Europe. Results of a 2 years follow-up multinational survey by the European Vision Institute Clinical Research Network – EVICR.net” has been published in the National Library of Medicine. It reports the results of the second multinational survey among…