2024 was a special year for Aniridia Italy, full of emotions and successes. In April, the association reached the record number of registrations, including new patients, families and supporters. In May, then, thanks to the annual fundraising campaign, carried out in collaboration with the Telethon Foundation, over 2500 euros of donations were collected which were used to allow the participation of an Italian doctor and geneticist in the 7th European Aniridia Conference which was held in Stockholm from 31 May to 2 June.
The most intense and gratifying moment, however, was certainly the realization of the XI national meeting of the association, titled “Anirdia’s Perspectives“, which was held in Turin from 18 to 20 October and which brought together 112 people including doctors, experts, patients and interested parties in a single place to discuss the main innovations related to the world of treatments, therapies and research on aniridia.
During the congress, moreover, there was also the opportunity to hold the meeting of the youth group and to live a special experience such as organizing a “Dinner in the dark“. A moment in the total absence of light that made the participants savor new food and wine tastes, but also allowed the creation of deep conversations on the sense of disability and the gradual deprivation of a sense such as sight.
Once again, therefore, the large Italian community dedicated to aniridia and the syndromes related to it has created a friendly environment, which was also able to address important issues to offer all the members the skills and knowledge to face the challenges proposed by their daily life.
Finally, within this event, were also given some updates on the new social and cultural projects related to the association and it was also presented a research, developed with the University of Brescia and dedicated to the quality of life of people with aniridia, especially in the relationship with their doctors. An interaction that is often complex and difficult to interpret in the best way by both parties, but on which more and more work is being done today, starting from the concept of narrative medicine, in order to break down the barriers of prejudice and preconception, with the aim of putting the patient and his experience in real contact with the medical doctors and their expertise, Because just together it is possuible to reach great results. This is an approach on which Aniridia Italy is focusing and which could be the real keystone for the future.