In Italy, a group of young adults with aniridia decided to do something more for their friends. In June 2020 they built a team composed by 4 young ladies and 2 young men who began to publish posts on social networks, creating funny digital events, promoting and supporting institutional initiatives realized by Aniridia Italy association. This group has become the Official Youth Group of Aniridia Italy and today it has skills and passion to engage, involve, interest, and help a lot of Italian patients who, during this year of pandemic, haven’t felt alone.
We have asked them to tell us their expereince in a webinar. You can watch the recording here.

The webinar was hosted by Barbara Poli, the chairwoman of Aniridia Europe. With participant speakers Alessandra Broda, Thomas Abbruzzo and Marta Ottaviano, who took us through their path for these past months for what they have done towards improving life and how they experience Aniridia. The idea of what could be done to entertain people and the concept for the project came to be years earlier but was more needed when Covid19 came in 2020.
Their mandate was to ask how people can become closer to each other even though they are forced to stay apart because of location, daily life and now, the pandemic. They started by giving out information about how aniridia is for them, how they can feel about the diagnosis and living with it. And then asked themselves how they could help people create a web in their association to be a wide and strong net to catch more people find each other.
Since they can’t have social meetings through normal means, they’ve then tried using social media and digital meetings. As well as try to engage people more and be more part of their web. There were issues though. Few people were engaged already and didn’t use the different social media platforms as much. Such that it was a slow start but with their aim of creating a network, they created new content and opportunities for others in their community to join in, they started to gather momentum and interest. Their final scope was to share positivity and helpfulness.
Initially they set up new open channels for communication like Instagram, restyled a YouTube channel to host content and twitter for institutional communication. In this way they started to talk in different ways on the different channels in order to involve different target of audiences. As well as in the “old channels” like Facebook, developed some new emotional activities to connect to each other of our community members and create a great family.
As time went, they set up a weekly editorial plan in September 2020 in an attempt to reach a wider range of ages. Propose everyday of the week, a new topic. E.g. ‘positivity and faith’ and following the idea of Alessandra and Edoardo from Italy, they created dedicated webinars where children, from the age of three to ten, and young adults, from ten to eighteen, can meet each other and spend quality time to play together and discover new things.
After 6 months their number of interested people had increased by a lot. More people wanted to talk about their lives. Then they wanted to try engage a larger range of ages to engage and meet each other.
Their Instagram network is an important tool for them to engage young people. And to have them approach and share their own story and positivity. The platform also gives the opportunity for people to share photos and videos. They could also give out their own content such as stories of individuals with accompanying video. Where the viewer can hear a story and read about the person.
All the messages they built and disseminated during this year were aimed to change the usual idea related to disability that identify handicap just as something negative. But in fact that disability could be more than it is thought as. Their view is that if you live with this perception of disability, then you should try to embrace a new mindset that helps you to transform the disadvantage into an advantage that you can create new stories with. And we need this new way of telling our stories to look at the future with faith and positivity to get new results and to give different points of view to the new generations.
But when they talk about generations, they didn’t only refer to people with aniridia but also to their families. They believe that their positive communication can impact also on the parental mood and perception about aniridia. Their work wants to show parents that living with aniridia can be more than living with fear and anxiety, you just need to find your way to do things respecting your time and needs.

Here below some of the questions that were asked from the audience and their answers.

-What does this project mean in a new way of building up aniridia?
It helps build up positivity and change,
-Do you think collaborating have helped you approach people in another way?
Collaboration is extremely important as well as with in life in general. Alone we couldn’t achieve these goals.
-If Instagram a hard platform to use for people with visual problems?
Instagram is hard to use, but it can also use video. So that people can listen to voices in the video rather than having to see the content.
-what was the most popular strategy for Instagram account from your experience? is it engaging post or something like giving advise or positive vibes posts?
The main goal is to make inclusive content. To engage people and be accessible. Such that the messages and posts can reach people in different circumstances and situations, in general terms.
-What is the best type of content to become inclusive to visual impaired people?
The goal is to be inclusive. So we started to make more videos and copied text that works for screen readers.
-What do you use to edit your content?
Viva Video and Imgshot as a tool on the phone to use for editing, as well as Windows movie maker on PC.
According to you, Marta, what is the best communication platform for your association?
After a year, Instagram is the best platform to reach more people, and more people contact us from there. Even families with small children has come to ask for help there.