News
Aniridia Europe among the patient representatives in EU-EYE CLEO
The EU-EYE (European Alliance for Vision Research and Ophthalmology) has established an organ composed by patient representatives, provisionally called CLEO: Council of Lived Experience in Ophthalmology. The main goals of this Alliance are: - to gather...
WAGR Spectrum: new evidence-based recommendations for medical care
We are pleased to report some very important news about WAGR. From France: in October 2021, the first national guidelines in France and in Europe on Wagr spectrum developed by GÉNIRIS and the OPHTARA aniridia reference center of the Necker-Enfants Malades hospital, in...
News from Russia
In July 2021, the Inter-regional support center for patients with aniridia “Iris” became the winner of the Presidential Grants competition. Through the financial support of the grant, the organization was able to print the following brochures and guides for...
A prospective study on living with aniridia planned in Norway in 2022
A new research project on health-related quality of life in adults with aniridia in Norway is in the starting phase, in close collaboration with Aniridia Norway and a research team at Oslo University Hospital, composed by Solrun Sigurdardottir, PhD, Charlotte von der...
News from Spain
We are happy to report the news we have received from the Asociación Española de Aniridia related to the period June-December 2021. The “Mes a Mes” (month by month) programme. The Spanish Aniridia Association has broadcasted live online webinars on different topics...
News from Germany
This is the activity report we have received from the German association AWS Aniridie Wagr e.V. related to the period June-December 2021 The team of AWS Aniridie Wagr e.V. has expanded in the middle of the year 2021, as the association has also grown strongly. Our...
In Norway we like to hike!
"The construction route known as Rallarvegen was originally designed for transporting materials during the building of the most mountainous sector of the Oslo–Bergen railway line. Today, the road is a cultural and historical monument where you will discover...
News from France, Switzerland, Benelux and Maghreb
In 2021, GÉNIRIS with AE has continued to represent the voice of patients with congenital aniridia and rare diseases of the anterior segment of the eye in ERN EYE with the beginning of the first European clinical consensus statement on congenital aniridia led by Pr...
Young Italians fly to Belgium to learn how to participate in EU volunteering projects
Increasing and easing the participation of visually impaired people to EU volunteering projects is a way to pronote inclusion and social awareness about the visual impairment. Some Aniridia Italiana APS representatives joined the training course "More opportunities...
News from Lithuania
Aniridia Lithuania has ended this year by launching the official website of the association, where a lot of information about aniridia can be found in Lithuanian language, as well as what to do first when you are diagnosed with aniridia. It is very important for...