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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News

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...

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. ...

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...

A budget of 1.4 million € has been recently granted by the EJP RD (for European Joint Research Program on Rare Diseases) to continue to push forward research on the treatment of aniridia-associated keratopathy (AAK), which is the most difficult part of the disease to treat. The AAK-INSIGHT project was proposed by a consortium of researchers from several countries, led by Prof. Neil Lagali (Linköping University, Sweden) and Prof. Daniel Aberdam (CNRS, Biologie, Inserm-Technion, France). The AAK-INSIGHT project aims to implement a drug development program for a gene therapy medicinal product for aniridia-associated keratopathy, eventually leading to the approval of a first-in-human clinical trial. The research consortium comprises 6 active members of AniridiaNet #CA18116 Action connecting research initiatives across Europe...

AniridiaNet #CA18116 action in cooperation with Aniridia Europe are happy to present this short awareness video, hoping it may help understand this rare and complex eye disorder, while INSPIRING RESEARCH efforts in the hopes of improving its diagnosis and treatment. Aniridia patients are unique, help us shape their future! Share this video and SUPPORT the community! Our special thank you to Dr. Christina Grupcheva from Medical University of Varna @MU_Varna_Press, @ScitoonsSpain, and the patients and families involved in the production of this video. ...