EAN – European Aniridia Network Meeting
On October 14th 2007, the first European Aniridia Network Meeting was held in Paris,.
Participants came from France, Italy, Norway, Spain and the United Kingdom.
To begin with participants were asked to state their expectations. All present agreed the main expectation was to create a European Alliance between the national associations. This would provide the opportunity to support each other, exchange information and experiences, learn from each other, foster research on aniridia and bring doctors from different countries in contact, with a hope that in the near future research projects could be developed at a European level.
Each association was then formally introduced by its representative. Everyone recognized that the main reason for creating the national association was the need for information, as information about aniridia is presently extremely limited and dispersed.
The more developed associations, such as Norway and Spain, are more advanced as they receive stable financial support from the government (Health or Social Ministry) .The other associations, due to limited funds, lack of staff and office space, have difficulties in setting themselves up. Board members have to cover expenses with their own money.
The Spanish association is organizing a conference on aniridia in Mallorca in May 2008. The objective is to make it international, ensuring the participation of doctors from different countries. This will provide an opportunity for doctors to exchange experiences and share information and data. With the Spanish protocol almost ready and the Italian workgroup on the guidelines for aniridia just getting started, the Mallorca conference could also grant the opportunity to consider the development of a consensus on a European Protocol for Aniridia.
It was decided that every national association would prepare a list of doctors – including ophthalmologists and geneticists – to be invited to the Mallorca conference. The conference will also include a moment when the doctors could meet the representatives from the national associations to listen to the patients’ point of view.
When the issue of creating a formal European federation was discussed all the participants agreed that the network was not strong enough at present to afford all the work and administrative procedures it would require. So it was decided to keep the network informal for now.
Nonetheless the group decided:
– to investigate the requirements needed to present a research project within the Framework Programs of EU Health Authorities;
– to develop a website where the European Aniridia Network could become visible and accessible in order to convey information and news. Each national association would be required to update information about its activities and any news on treatment or research coming from within their country. The website and its content will be in English.
“Medicallistes”, the Aniridia mailing list promoted by Eurordis, will be relaunched by the national associations, which will also launch a sub-list for the under 25’s.