The first half of 2021 has been a very intense period for Aniridia Europe, full of worldwide contacts and exchanges and of activities.
Our collaboration inside the Aniridia-Net COST Action allowed us to plan a series of scientific webinars that started in February, during the Rare Diseases week, and continued in spring until the international Aniridia Day. Aniridia-Net scientists, together with their excellent invited guests, offered the patient and professional community all over the world an overview of the most recent and interesting updates in aniridia field with the following webinars:
– News from the frontier: updates on aniridia treatment and research, 27th February
– Eyes open on stem cells dynamics, signature and niche, 26th May
– Managing aniridia: dos and don’ts from infancy to adulthood, 21st June
You find all the recordings on our YouTube channel.
And stay tuned, because the series resumes in September!
Other webinars were instead focused on social topics and aimed at showing how people with aniridia can find their way in spite of all the difficulties they face, and especially in these hard times:
– Digital rebels against distance, 24th April, a success story that narrates how – thanks to the digital transformation – aniridia communities can remain close and in meaningful contact with their members and families that could not meet face-to-face because of the pandemics but still needed information and support
– Breaking barriers with aniridia, 20th June, where some young people shared their own personal experience on how they overcome difficulties in life. This activity was preceded by an interesting collaboration with a young influencer, Brooke Kuehl, who created a promotional video for Aniridia Europe. Don’t miss to watch it:: Breaking Barriers – Aniridia Day 2021.
The Erasmus+ project Looking out for a school for all, whose outcomes are a digital application for early visual stimulation in children and a teacher’s handbook for school inclusion, has been presented in Spain, Italy and Norway and will be soon presented in English during the European Aniridia Conference on 1st August. Moreover, we are participating with the same partners to a new application, this time concerning the inclusion of visually impaired pupils in the primary school.
Learn more at the project’s website.
The Aniridia Day on 21st June was an opportunity to engage people and create awareness on aniridia. Apart the activities already mentioned above, Aniridia Europe launched an International Photo Contest dedicated to Aniridia Day and the results were really amazing. We received more than 300 photographs from 16 countries of the world and the jury (the members of the Board) had a very hard time in choosing the 13 winners, whose photos will be included in 2022 Aniridia calendar, because all the submitted photos were wonderful. They express joy, happiness, vitality, love and all together they offer an incredibly strong and lively sense of life.
No need to say that Aniridia Europe is participating as usual to the networks that are strategic for the community, such as the ERN-EYE (European Reference Network for Rare Eye Diseases), as well as the various working groups of the Aniridia-Net COST Action.
Our membership to Eurordis allowed us to participate to many important assemblies and meetings, among which a digital meeting with a member of the European Parliament in order to advocate – together with other RD organisations – for equity of access and appropriateness of care for all rare patients. We also succeeded in getting an Eurordis grant that allowed us to purchase some equipment and tools to perform the digital activities.
On the internal organisation front, we must underline that the Board, whose members are all very committed and involved in all the activities, was supported by a larger group of volunteers. In particular, I want to thank the young digital team that made possible the achievement of all the digital events.
Last but not least, we are approaching the most important event for the aniridia community: the European Aniridia Conference on Saturday 31st July and Sunday 1st August. The conference, that could not take place in 2020 because of the pandemic, has been rearranged as a digital event through a hard and very challenging work by the Aniridia Network organising team together with its Scientific Committee. We must all be very grateful to their work and dedication. And the best way to say thanks is to register to the conference. Then, be sure you don’t miss it!
All the best
Barbara Poli