Dear friends,
this year has been very challenging for all the world, and even more challenging for people, like us, that face difficulties every day in their lives.
But one lesson we have learned during these years: together we are stronger, together we can better address the challenges of this condition called aniridia.
Collaboration and mutual support are among the core values of Aniridia Europe, and this is why we are participating in many collaborative projects.
For example, taking part in the Aniridia-Net COST Action allowed us to organise a series of scientific webinars that started in February, during the Rare Diseases week, and continued in spring until the international Aniridia Day, and then in autumn, with the webinar:
– A fresh look to aniridia pathophysiology with a focus on translational implications, 22nd October 2021
You find all the recordings on our YouTube channel. Thanks to this collaboration, the webinars will continue in 2022 too.
Moreover, through Aniridia-Net, the collaboration among professionals is developing many interesting perspectives for treatment and care, and more and more scientific research projects are being carried out. Have a look at our page on scientific literature to get a (very partial) idea about what is going on. In the words of Professor Lagali, Aniridia-Net coordinator, 2022 “promises to be an exciting year for pushing forward aniridia research”.
As for the social projects, the Erasmus+ project Looking out for a school for all, on early school inclusion, has been concluded and we are already applying for the next edition. We hope we can succeed. Learn more at the project’s website.
The European Aniridia Conferences deserve a special place in this summary.
In 2021, the hard work of Aniridia Network made possible the organisation of the 5th European Aniridia Conference as a very successful online event. But we are not resting on our laurels, and the Spanish Aniridia Association is already working on the organisation of the 6th European Aniridia Conference, that will take place in San Juan de Alicante (Spain) on 4th and 5th June 2022.
We could finally develop a dedicated website for the conference, aniridiaconference.org, thanks to the conjunct work of Aniridia Network, Aniridia Spain and Aniridia Norway; this latter is also ensuring the financial support for the website hosting. On this website you can find all the available information on previous conferences from EAC 1 to 4, the link to the recordings of EAC 5, and the programme of the next conference. Start planning your participation, and stay tuned, as more information will be available soon!
As well as taking part in Aniridia-Net working groups, Aniridia Europe is being involved in the Council of Lived Experience in Ophthalmology, an organism of the EU-EYE (European Alliance for Vision Research and Ophthalmology). Rosa Sánchez de Vega, Aniridia Europe’s board and honorary member, is our representative in this council.
At the international level, in 2021 we could welcome a new fellow association, ANA (Aniridia North America), and we are really looking forward to collaborating with them in the next months, as we have already started to do.
Last but not least, we can open the new year with the wonderful calendar developed by Aniridia-Net with the beautiful pictures of children sent by the families from all over the world. As I have already written in the previous newsletter, they express joy, happiness, vitality, love and all together they offer an incredibly strong and lively sense of life.
All this is only possible thank to the hard work and great commitment of all our national member associations and our volunteers. Aniridia Europe’s Board wishes them all a healthy, joyful and fruitful new year 2022.
All the best
Barbara Poli