A report by Neven Milivojevic, representative of Aniridia Sverige.
In 2021 the Swedish aniridia association, Aniridia Sweden, had 66 members. The association is a member of the Swedish Association of the Visually Impaired as well as of the Swedish National Association of Rare Diseases.
Due to the pandemic, in 2021, the annual national meeting was held digitally, but in 2022 it was part of a member meeting during a long weekend in April, at the Almåsa Sea Hotel.
As the association has members that live in different parts of Sweden, main contacts with our members is done via our Facebook group which is currently open also for non members.
The association was founded as a network in 2005, whereas a formal association was established a few years later. We have always been active in the European cooperation and more specifically in Aniridia Europe, and at the moment our President Ivana Kildsgaard is a member of the Board of Directors. She is also very active in the scientific work of Aniridia Europe and Aniridi Sweden.
At the moment we are investigating the possibilities of organising the next European Aniridia Conference in the beginning of 2024, in cooperation with Prof Neil Lagali from the Linköping University. There are many challenges, so it is not confirmed yet, but we are working as much as we can to make it possible.