Highly recognised and well known geneticists and ophthalmologists from different European countries met to unify criteria about the diagnosis and treatment on Aniridia
In this meeting that took place in Mallorca, May the 2nd 2008, the Spanish” Protocol for the management of patients with Aniridia”, introduced by the Minister of Health, Bernat Soria, was presented
Aiming at exchanging the isolated experiences in the diagnosis and treatment of patients with aniridia, the last scientific advances, findings investigations, clinical trials, the Spanish Aniridia Association brought together the best experts in this unfrequent ocular and genetic disease. Several initiatives in the different countries, such as epidemiological studies and registries in the Norhern countries and genetic screening in England and France, as well as the experience of the Centre of Reference for rare ocular diseases in France together with some interesting Italian clinical results.. were put in common.
Sharing there knowledge, meeting other experts on aniridia was considered very positive by all the participants and encouraged them to develop a future common and consented European protocol for this diseases and summit a project to the European Commission.
Because of the scattered patients with this low prevalence diseases and scattered and poor professional experience, and due to the diverse ocular alterations associated to this disease, this meeting was essential to unify criteria for the treatment of these patients, prevent repeated trials and share results so that they could learn from each other and step forward.
The Spanish protocol for the management of patients with Aniridia, written by the most prestigious Spanish ophthalmologists will be presented at the next Congress of the Spanish Ophthalmologic Society in Sevilla, September 2008, This will be the base to develop a European one, once it is translated into English and assessed by the other participants in the meeting, who will to meet again in 2009.
Aniridia associations form different European countries also participated in the meeting in Mallorca: Italy, Norway and France. They established a European network of patients with Aniridia. All of them are fostering research, raising awareness on the diseases and supporting families and affected people in order to improve their quality of life.
“We have many expectations on the protocol. We hope that from now, Aniridia will go out of the darkness. With the dissemination of this guidelines to all ophthalmologists in Spain, every patient with Aniridia will be better diagnosed and will receive the best and last treatment, so that degeneration is prevented, visual acuity better preserved, as well as unnecessary and wrong surgeries avoided”, as Yolanda Asenjo, president of the Spanish Aniridia Association stated.