01 Apr 2021 A live webinar to celebrate Rare Disease Day 2021: latest news on aniridia treatment, research and the ANIRIDIA-NET COST Action.
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 to help treatment decisions; critical reviews of novel treatment alternatives (based on stem cells, agents suppressing vessel growth, etc.) are some of the main outcomes of these efforts.
Moderated by Ivana Kildsgaard (chairperson of the Swedish Aniridia Association and Aniridia Europe’s Board member), this webinar contributed to raising awareness on aniridia, and to disseminate knowledge on the current developments and networking activities taking place to get scientists and ophthalmologists to work together to improve the quality of life of aniridia patients.
This will be the first of a new series of live webinars that the ANIRIDIA-NET COST Action will be facilitating, to stimulate discussion in this field.
A short awareness video created by ANIRIDIA-NET was also presented as part of the webinaras.