In 2003 a group of Italian families from Rome, Venice , Udine and Lecco decided to meet up in order to talk about their life with Aniridia. From that lunch together, everything changed not only for them, but also for the future of Aniridia’s patients in Italy and abroad.
In 2005, after two years of work, this group of Italian families decided to share their forces in order to give a better future to their children. At that time, the Italian law was allowing to create an association, if there were at least 3 people who share a common objective. They had to enstablish an associative statute which had to be certified by a notary and then depositate to the Income Revenue Authority. After this step, the association was created and received its identification code and a banking account.
During the following years the Italian association put its effort in organizing national meetings both for patients and medical doctors and specialists in order to discuss new possible treatments for Aniridia and finding daily life solutions to overcome all the difficulties faced by the patients. From 2005 up to 2023 the Italian Association created more than 20 events all around the country form big cities like Rome, Milan and Venice to small cities like Pisa, Parma, Padova and others.
In 2013 the Italian National Center for Rare Disease (CNMR) at Superior Healthcare Institute realized with a group of specialists the «Congenital Aniridia Management Guidelines». The work was made in collaboration with Aniridia Italiana APS. These guidelines offered raccomandations for clinical behaviors, and they were elaborated through a systematic literature and experts opinions review process, with the aim to help medical doctors and patients to decide the best practices and therapies to use for every specific clinical situation. Still
today, the Italian guidelines represent a milestone and also a benchmark at global level in treating Aniridia under a medical point of view.
A part of these activities, during these 20 years Aniridia Italiana made a lot of special projects to help people to live the condition of Aniridia in the best way possible. Among the realized projects there are: LOW VISION SPORTS GUIDELINES, LOW VISION SCHOOL GUIDELINES, DIGITAL DEMO SESSIONS TO APPROACH THE DIGITAL ENVIRONMENT, CHARITY FUND RAISING CAMPAIGNS, ANIRIDIAX COMICS & EXHIBITION, INTEGRATED COMMUNICATION STRATEGY, DIGITAL TRANSFORMATION PROGRAM, INTERNATIONAL PROJECTS FOR ANIRIDIA AND LOW VISION AWARENESS.
All these projects were a beautiful and touching experience that helped Aniridia Italiana to understand how much is important to continue in its activity in order to make the patients’ life better and easier. And this was the best result we reached.
Today, all of our members live the association as ONE-Family where they can find support, friends, love and people to have a chat about their daily issues. And one of the best example of this is the mutual-help group composed by just young boys and girls who once per month meet up together via skype and talk about theirselves completely free and safe. Today every young patient with Aniridia in Italy knows that he/she is not alone and its future is stronger even just for this thought.
Since 2003 Aniridia Italiana has helped more than 150 people in the country and we hope to have the opportunity to help others in next years to make a better future for all people who everyday face this rare disease with a big smile.
Happy birthday Aniridia Italiana APS we are proud of you!