Italian Aniridia Association – 5th national congress

Padua, 25th-27th of November 2011 –

Aniridia Italiana, the Italian Aniridia Association, organized its 5th  national congress from 25th to 27th of November 2011 in Padua (Veneto Region).

More than sixty people – patients, parents and relatives – attended the congress and the agenda of the meeting was characterised by the presence of many qualified speakers and full of important issues linked to aniridia condition and its implications.

 During the first afternoon of the meeting the speakers were Dr. Maria Luisa Pinello, head of the Regional Centre of the Padua University for Children’s Low Vision, member of the working group on the Italian Aniridia Guidelines, and Dr. Guido Ponzin, Director of the  Eye-Bank Foundation of Veneto, who answered to the questions of participants. The meeting, based on physician-patient informal and direct dialogue, allowed the participants to ask questions that can hardly be addressed during the medical examinations and to explore topics of the greatest interest. The main topics were UV protective lenses, contact lenses, corneal diseases, glaucoma and cataracts in association with aniridia.

 The next morning, Vanda Brunelli, a clinical educationalist, led the group to explore the implications of personal identity development in children with visual impairment and the affective relationships and communication within their families. This session required the active participation of the whole group and entailed a great intellectual and emotional involvement. The aim was to emphasize the need for each individual to develop strategies to adapt to the disability, where adaptation is not intended as resignation or passivity, but rather as the ability to intelligently understand the real life and to deal with it appropriately.

 The afternoon of the same day the general Assembly of the Italian Aniridia Association took place. During the assembly it was announced the establishment of Aniridia Europe, the federation of European Aniridia associations, and the launch of the first European Conference on Aniridia that will be organized in Oslo in June 2012. The members were also informed about the state of the art of the Italian Guidelines on Aniridia that are progressing by the National Centre for Rare Diseases of the Istituto Superiore di Sanità (a technical body of the Italian National Health Service).

The morning of the next day the speaker invited was Giuseppe Scalise, president of Padua Section of the UICI (Italian Union for the Blind and Visually Impaired people).

Mr Scalise, with his undisputed expertise, firstly presented the issue of assistance, social integration and rights of persons with visual disabilities,  then answered to the questions of participants. Among other topics, were also presented the requirements for applying to the legal blind commission and were provided recommendations for preparing the required documentation. The open and friendly mood also made it possible to share useful information not only as a psychological encouragement but also as a clear and conscious tool to approach issues that are complex and actually distressing for those who have to deal with them.