24 Mar 2020 Webinar on aniridia genotype-phenotype studies for the Denmark Aniridia Patient Association.
Prof. Neil Lagali, Chair of the COST Action ANIRIDIA-NET and researcher at the Linköping University (Sweden), has recently given an interesting live webinar for the Denmark Aniridia Patient Association during its Annual meeting held in Fredericia (Denmark) on the 7th of March, 2020. In his talk, Dr. Lagali presented key findings on the association of genetic alterations and the different clinical manifestations and progression rates observed in the disease, findings that may lay the foundations for a better clinical management of aniridia patients in the near future. The goals and current activities within the COST Action ANIRIDIA-NET were also communicated to the group of assembled patients, families, and representatives. In research as well as in clinical practice, patient involvement is paramount, as it can contribute to setting priorities, medical decision making, study design, patient recruitment, oversight of information, and dissemination or application of results. In the COST Action ANIRIDIA-NET, aniridia patient representatives are actively involved as full members, and thus they maintain a close two-way dialogue with ophthalmologists and researchers working to enable a better understanding and management of the disease.