On Saturday, January 22, 2022, the reference center for rare diseases in ophthalmology (OPHTARA) at the Necker-Enfants malades hospital organized its first therapeutic education session dedicated to congenital aniridia.

Led by Pr Dominique Bremond-Gignac (head of the ophthalmology department at Necker), Pr Matthieu Robert, Dr. Alejandra Daruich-Matet, and accompanied by Brigitte Garbi (in charge of the TPE program) and Emmanuelle Kutner (in charge of the PNDS program) as well as two administrators of the Gêniris association, Chantal Biger and Gaëlle Jouanjan, this therapeutic education session allowed patients and their families to learn more about this rare genetic disease and its daily management.

Using an educational easel prepared specifically for this theme, the OPHTARA center’s physicians were able to discuss with the participants throughout the morning and answer the many questions that this disease raises in their daily lives. This workshop, rich in learning and advice, should thus enable these families and patients to acquire greater autonomy and to better live with their pathology.

This TPE program dedicated to congenital aniridia is the first of its kind in France but also in Europe and in the world. Given the success of this first experience on congenital aniridia, other similar sessions should take place soon.