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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…
The Spanish members of the ERN-EYE working group 2 on neuro-ophthalmology met on 30th January. 19 people took part in the meeting.
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…
Preoperative, intraoperative, and postoperative data of patients with RP who were undergoing cataract surgery were collected from several expertise centers across Europe in a retrospective, noncomparative clinical study. In total, 295 eyes of 225 patients were included in this study. The results of the study are the topic of the…
The European Joint Programme on Rare Diseases launches today the Joint Transnational Call 2023, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases. This year’s topic is: “Natural History Studies addressing unmet needs in Rare Diseases” The aim…
Photo submissions for the Photo Award 2023 are now open, until 22nd January 2023 (see form below). The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond. The contest…
