EAN – European Aniridia Network Meeting
Skype, 6th of February 2011
REPORT
On Februay 6th, 2011, an European Aniridia Network Meeting was held via Skype.
Participants were from Denmark, Finland, Germany, Italy, Norway, Spain, Sweden and the United Kingdom
After a short presentation of participants, especially the newly entered in the network, the agenda was approved and discussion started.
Report on the web project
People in charge of the web project presented the draft version of the new website, to be found at www.aniridia.eu; it had been developed using WordPress, a free software system that allows for more than one person to add information to the website.
Nonetheless, at the moment updating of the website was restricted to the administrators, in order to ensure consistency.
It was decided that a message would be sent to the network members with more detailed information about how everyone could contribute.
Reports on the project “Strengthening national organizations in Europe”
During the previous meeting in Paris all the participants were tasked to mentor another country to start working together. Now they briefly reported on their work.
Persons were successfully contacted in Germany, Finland, Serbia, Croatia, Greece.
Attempts are ongoing to contact persons in Portugal, Ireland, Belgium and The Netherlands.
The group considered positively that in a short time contacts had been enlarged and pointed out that this is a never stopping project that would continue in the next months and years.
The group agreed on preparing a general text about aniridia and translating it in many languages, especially those of countries where there isn’t an association; the text, together with the reference persons in the different countries, will be put on the website to give first basic information on the disease and to establish contacts between persons.
Status of the Conference 2012 in Oslo
Norwegian delegates reported that the main funds had been secured and that two workgroups had been established, one is working on the organization and one is a scientific group for doctors. A first announcement for the conference will be soon finalized.
Report on the conference in Stockholm, Mars 2011
Swedish delegates reported that the conference in Stockholm, March 26th-27th, would be the largest aniridia meeting in Sweden ever and would include a medical lecture.
The conference is open to the Nordic countries (Norway, Sweden, Finland and Denmark).
The proposal from AFI – Aniridia Foundation International
The proposal from AFI was read and analyzed. Opinions were put forward and all agreed that collaboration between AFI and EAN is very important.
Nonetheless, at the moment it would be difficult for EAN to formalize an international cooperation as it is not a formalized organization yet.
Moreover, it has to be cleared how EAN can actually cooperate as European countries have different national laws and different national health systems.
EAN Spokesperson will summarize the question and contact AFI.
Proposal from The Norwegian Aniridia Organization: Next step towards creating the
European Network of Aniridia Associations (ENAA)
The proposal was accepted in its main lines. The group agreed that Rosa Sánchez de Vega – who has the greater experience at an international level for her position in Eurordis – should be the Spokesperson and she accepted. Neven Milivojevic (Sweden), Katie Atkinson (United Kingdom) and Barbara Poli (Italy) were nominated as Vice-Spokespersons.
It was decided a period of approximately six months to formally establish the network of Aniridia associations at European level.