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 Brémond-Gignac.
For Aniridia Day, GÉNIRIS organised an international photography competition with « the weather is fine » thematic. Victor, Laurine from France and Irène from Switzeland won 3 photos of Damien Gatinel, French photographer and ophtalmologist. @Damien Gatinel
At national level, GÉNIRIS and the OPHTARA aniridia and rare eye diseases reference center of the Necker-Enfants Malades hospital, in Paris in France, have joined forces to create the world’s first therapeutic education program (TEP) for patients with congenital aniridia. The purpose of this TEP is to make the patient actor in his care, to help patients and parents to acquire and maintain the skills necessary to better manage their chronic and degenerative disease throughout their life in the framework of a personalized approach. The first educational workshops will take place in 2022 and will be offered by Pr Brémond-Gignac and ophthalmologists from Necker Hospital with the participation of Chantal Biger and Gaëlle Jouanjan, two members of Gêniris board trained in TEP.
Since 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 Paris in France is published here .
GÉNIRIS with its members collected more than 40,000 euros too. These funds will make possible to finance a 2022 French call for research projects devoted to congenital aniridia, wagr spectrum and ARS.
In 2022, GÉNIRIS will organise its annual meeting on 19th March where patients and families could llisten to a presentation about « ARS with or without congenital anirIdia » by Pr Dominique Brémond-Gignac and « Changing cell identity to heal cornea in congenital aniridia » by Pr Daniel Aberdam.