News
Aniridia as a rare condition and its effect on psychological health
On 1st August 2021, in the framework of the 5th European Aniridia Conference, Dr. Galina Gening* presented the results of a study on the impact of aniridia and WAGR syndrome on the psychological states of patients and their families. In the last decades aniridia and...
The 5th European Aniridia Conference has been a great success! Recordings available
The 5th European Aniridia Conference this year had to face many challenges, that included the postponing from 2020 to 2021 and the complete transformation in an online event. In spite of all this, the conference displayed over the two days (31st July and 1st August...
Aniridia and WAGR patient brochures published in Russia
When you are dealing with a rare disease such as aniridia, there is a lot of information that you come across in a short time, and it is really difficult to understand what are the most important things that you need to know and to do, and in which priority order....
News from Aniridia Europe, July 2021
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,...
Young volunteers grow up in Aniridia Network (UK & Ireland)
Volunteers are the heart of an association (visit our page on this), and this is especially important when they are young because they can help their peers not to feel alone and to be hopeful, confident, supported and well informed. Young Aniridic Aaron has helped us...
Let’s go digital in Spain
Due to the pandemic situation, The Spanish Aniridia Association has organised a series of monthly webinars “Mes a mes” in Spanish on its youtube channel, about different topics related to Aniridia, such as on glaucoma, on cataracts and ocular surface, social...
From Russia with expertise
For the celebration of the International Aniridia day there has been 2 meetings in the form of a QnA session. between doctors of the Russian Aniridia Centre and Russian speaking families with Aniridia and WAGR syndrome. On 21st June the questions where answered by...
News from Ireland
Upskilling Re Charity Involvement May 2021 saw me complete “The Certificate in Charity Law Trusteeship and Governance” at the Law Society Ireland and other courses at the Wheel. Medical Professionals with involvement in Aniridia practicing in Ireland Prof Keegan, at...
Need advice on living with aniridia? Just ask Alma!
Hey, my name is Alma Akerlie and I have written a book titled «Høy måloppnåelse» (Achieving high goals). The book is about my experiences in high school. I am giving advices on how to do good in school and hopefully spreading some motivation and joy. I am also writing...
Aniridia news from France, Maghreb and Benelux: research, funding and patient care
In 2021, GÊNIRIS finance two research projects on aniridia with pediatric glaucoma (Pr Brémond-Gignac at Necker Hospital in Paris) and on artificial limbal niche (Pr Borderie at CHNO des 15 20 in Paris). To continue to help the research development in 2022, GÊNIRIS...