FINAL REPORT

The 2nd European Conference on Aniridia, Venice (Italy), 19/20 September 2014: the outcomes

General overview

Topics:  glaucoma, cataract, posterior segment, ocular surface, genetic bases, clinical management of pediatric patients, comprehensive approach to the child in congenital aniridia.
Format: each session consisted of one or more keynote lectures that were then discussed by a panel of experts. One session was specifically designed to involve patients and parents that could make questions and interact with the doctors.
Best abstract acknowledgement: Dr. Per Fagerholm et al., Aniridia associated keratopathy – is it time to evaluate treatment?
Special mention to:  Wibeche Ingskog et al., ”Living with aniridia” – One voice!, and Dr. J.M. Rozet et al., PAX6 mutation in French patients: an update
Announcements:

  • Jill Nerby, president of  Aniridia Foundation International, launched and promoted the next AFI conference in Vancouver in  2015
  • Domenica Taruscio, head of the Italian National Centre for Rare Diseases (ISS-CNMR),  announced the endorsement of the English translation of the Italian guidelines on the Management of congenital aniridia.

Publication: the international publisher Springer released a publication on the disease with the collaboration of most of the speakers. The medical and scientific outcomes of the conference on the different topics were therefore taken into account and made available to the public.

Aniridia: Recent Developments in Scientific and Clinical Research, Springer 2015
Editors: Stefano Ferrari, Mohit Parekh, Barbara Poli, Diego Ponzin, Corrado Teofili
ISBN-13: 978-3319197784
ISBN-10: 3319197789

Donation: the scientific quality of the event attracted a donation of 40,000 euros to the Fondazione Banca degli Occhi del Veneto to be used for a research project on aniridia.

Figures

    • 2 days
    • more than 20 hours of lectures and discussions
    • 3 sessions directed to physicians and researchers
    • 1 session open to patients and parents interacting with doctors
    • 35 members of the faculty
      • 30 professionals
        • 14 from Italy
        • 12 from other countries in Europe
        • 4 from the USA
      • 5 patients’ representatives
        • 1 from Italy
        • 3 from Aniridia Europe
        • 1 from Aniridia Foundation International
    • 113 attendees:
      • 47 professionals
        • 20 from Italy
        • 27 from other countries
      • 66 patients
        • 40 from Italy
        • 26 from other countries
    • Total number of professional participants: 77
    • 100 participants to the Gala Dinner
    • 18 abstracts submitted
      • all published
        • 13 clinical topics
        • 5 genetic topics
      • 12 selected for oral presentation
    • 3 articles published on newspapers
    • 1 TV report

 

Around the conference

  • On Thursday September 18th the Scientific Committee of Aniridia Europe met to work on the creation of a network of doctors in Europe as a fundamental basis for any research project on the disease.
  • During the conference, a group of geneticists met to discuss the possibility to create a consortium among the Departments of Genetics and Research Centers dealing with aniridia in order to facilitate communication and standardization of their procedures.
  • On Saturday evening there was a meeting with the organizers of the project Youth in Europe with Aniridia, a summer camp for young people from 5 different countries that will take place in summer 2015 in Italy and whose value is going to be really relevant as far as the empowerment and social inclusion of visually impaired youngsters are concerned.
  • On Sunday September 21st the General Assembly of Aniridia Europe was held in Venice to elect the new Board of Directors of the federation and discuss the main strategic lines of its action.