On the occasion of the 15th International Rare Disease Day, the rare disease expertise platform of the AP-HP university hospital group. Center – University of Paris proposed to all the reference centers to produce posters explaining the therapeutic patient education (TPE) programs implemented for 2 years. Regularly new posters will be published on this site.

This first poster is devoted to the therapeutic education program developed by the reference center for rare diseases in ophthalmology (OPHTARA) concerning the global support of patients with congenital aniridia.

General public summary :
There were few therapeutic education programs in sensory pathologies, although needs had been expressed by patients. A questionnaire was thus developed with the participation of the Gêniris association, to identify all the needs and expectations of patients with congenital aniridia. Based on the information collected, three audiences were identified to participate in a therapeutic education program on congenital aniridia: children, adolescents and parents of affected children. This program therefore offers many educational tools adapted to these audiences. It was developed in accordance with HAS recommendations.