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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18 Apr 2021

Posted at 07:27h in news by
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The Deutsche Ophthalmologische Gesellschaft Annual Congress, held entirely online on october 2020, included an aniridia-focused symposium titled:”Congenital Aniridia: new clinical, genetic and molecular insights from patient cohorts in 5 European countries”. Chaired by Nóra Szentmáry (from the University Saarland) and Neil Lagali (from the University of Linkoping), this symposium provided an update of our current and evolving knowledge of the genetic, clinical, micro-morphological, and molecular aspects of AAK. Opening the session, Barbara Käsmann-Kellner (from the University of Saarland) provided a comprehensive explanation of the broad phenotypic spectrum of PAX6 mutations. Continuing with the symposium, Maria Notara (from the University of Cologne), sets forth the specifics of limbal stem cell deficiency in aniridia patients, followed by an exposition of recent translational findings from ocular surface samples by Lorenz Latta (from the University of...

03 Apr 2021

Posted at 19:34h in news by
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Last year, the World Society for Paediatric Ophthalmology and Strabismus (WSPOS) dedicated its 14ht webinar entirely to aniridia. With the participation of recognized experts from four different countries, including Neil Lagali (from the University of Linkoping, in Sweden), Dr. David Walton (from Massachusetts General Hospital in USA) and Hannah Scanga (from University of Pittsburgh, in USA),  Dr. Dominique Bremond-Gignac and Dr. Ken K. Nischal guide the discussion through the in’s and out’s of genetic testing, phenotype-genotype variability, AAK, glaucoma and cataract in aniridia patients. The therapeutic potential of Ataluren, a recent drug under trial for aniridia, was also an interesting topic of discussion in this session. If you missed the webinar, you can find the recording in this link: ...

03 Apr 2021

Posted at 06:20h in news by
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Professor Neil Lagali of the Department of Biomedical and Clinical Sciences at LiU and Senior Lecturer Inger Berndtsson at the Department of Education and Special Education, University of Gothenburg, have received an award from the Swedish Association of the Visually Impaired. This prize is awarded to researchers and other professionals who have made significant contributions to increasing understanding of the life situation of visually impaired people. The jury includes representatives from the Swedish Association of the Visually Impaired, the Swedish Ophthalmological Society, the Swedish Optometric Association, and the Association for Visual Rehabilitation. “I am incredibly grateful for the award. It’s important to study rare eye diseases such as aniridia, both from the perspective of eye care and for scientific reasons”, says Neil Lagali. Congratulations Neil...

02 Apr 2021

Posted at 21:27h in news by
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Following our call for drawings on the Theme “Living with Aniridia”, Aniridia-Net in collaboration with Aniridia Europe has edited and printed beautiful calendars using a selection of all the lovely drawings received (have a look at them here!). We would like to express our gratitude to all the children that contributed with drawings for this initiative. The selection was very tough, as all the drawings were beautiful and presented very inspiring messages. Thanks to our little artists these calendars haves exceeded the expectations: they have delighted our community bringing joy and inspiration to continue to work together to improve the quality of life of aniridia patients. We hope that you received your printed copies safely. Alternatively, download a printable version here. ...

01 Apr 2021

Posted at 18:01h in news by
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Organized by Aniridia Europe, with the participation of COST Action ANIRIDIA-NET Chair Prof. Neil Lagali (from the University of Linköping, Sweden) and Vice Chair Prof. Dr Claus Cursiefen (from the University of Cologne, Germany), this live webinar presented the goals and strategies of the ANIRIDIA-NET COST Action, as well as the most significant steps being taken to improve treatment and stimulate research in this disease. Comprising members from over 30 countries in Europe and beyond, ANIRIDIA-NET is the biggest research network focusing on aniridia in the world. This action brings together a critical mass of researchers, physicians, patient organizations, and other interested parties to focus on improving the lives of aniridia patients and families. A consensus guideline on current best practices for the treatment of aniridia patients; a novel keratopathy grading system...