Aniridia is a devastating ocular disease requiring intensive eye care, social and community support from birth and throughout an individual’s lifetime.

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21 Nov 2020

Posted at 19:33h in meetings, news by
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On the 26th of October AniridiaNet COST Action CA#18116 members connected for the action’s 4th MC meeting taking place fully online. A highly successful meeting that gathered ophthalmologist, researchers, industry and patient’s organizations members from 22 countries. Thank all the members for their enthusiastic participation in discussing the current progress of the action and stimulating a closer collaboration for improved understanding of aniridia and related eye disorders. ...

21 Nov 2020

Posted at 17:56h in news, STSMs by
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Dr. Gerard Boix Lemonche, a postdoctoral researcher from the University of Udine (Italy), recently returned from a scientific mission in the research group of Prof. Petrovski at the Center for Eye Research of the University of Oslo, Norway. The purpose of this fruitful mission was for him to gain hands-on technical experience in the production of bioengineered 3D corneal scaffolds, as well as in the isolation of corneal stromal and limbal epithelial stem cells from leftover donor corneas. This training provided Dr. Boix Lemonche with the expertise for developing of 3D corneal models and stablished the basis for future collaborations among both participating institutions. This scientific mission was made possible thanks to Aniridia-net CA18116 COST action networking tools. Representative...

24 Jun 2020

Posted at 10:52h in news by
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Summer is officially here, and that means that kids will have lots of time to get out the paints, pencils, and crayons and become little artists. To encourage this creativity, Aniridia-Net COST Action is inviting children with aniridia or their friends or relations to draw something creative relating to their experience with aniridia. The winning drawings will be used in the design of 2021 calendars and their little authors will get a printed copy of it! We hope that through this initiative, children will be able to express their imagination and learn more about aniridia and the needs of our patients. Patients associations, ophthalmologist, researchers, teachers are encouraged to support and share this initiative among their networks. Download...

29 May 2020

Posted at 06:18h in news by
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Last 14th & 15th may, during the Annual European Conference on Rare Diseases & Orphan Drugs (ECRD), Ivana Kildsgaard, Swedish member of Aniridia Europe and active ANIRIDIA-NET participant, presented an online poster about CA18116 action’s goals and strategic plan towards improving clinical management and research in aniridia patients. Organised by EURORDIS and co-organised by Orphanet and the DIA, the ECRD conference is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies. This 10th edition of ECRD, which took place exclusively online for the first time, was an unprecedented success, with a record 1,500 participants from 57 countries registered and 100+...

02 May 2020

Posted at 09:19h in news by
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We are pleased to announce the upcoming thesis dissertation of one of ANIRIDIA-NET Action’s participants, Mrs. Hilde R. Pedersen from the University of South-Eastern Norway, which can be followed digitally via zoom using this link. Next May 12th at 13:00 pm CEST she will be presenting the key aspects and conclusions of this aniridia-focused investigative work titled «The Retina in Congenital Aniridia – Structural, Functional and Genetic Variability». Her thesis entails a thorough analysis of variations in genotype and retinal structure, and its implications in visual impairment in aniridia patients. Observations reveal that aniridia patients have fewer photoreceptors with a large variability in structural underdevelopment, causing major visual anomalies that can correlate to the patient’s PAX6 mutation genotype. Any questions...