Board and Networking meeting
On November 19th and 20th, 2011, in Paris, the first Board and Networking Meeting was held, since the formal constitution of Aniridia Europe, the Federation of European aniridia associations.
Participants came from Spain, Norway, Sweden, United Kingdom, Italy, Germany and Bulgaria. They represented a network of people and organizations from seventeen European countries.
The President, Ms.Rosa Sánchez de Vega, opened the meeting on Saturday with the document Aniridia Europe in 2020. The medium-term objective that was stated was to ensure that within 2020 every child born with aniridia will receive proper medical and social assistance, This will require the creation of a strong network of patients across borders, working within the framework of EU rare diseases policies and protocols.
All participants focused on the following aim: promoting the creation of new associations in countries where they have not already been established, analyzing all the different strategies and opportunities experienced by existing associations in the past and developing a handbook laying out standards of good practice.
Mr. Asbjorn Akerlie, member of the Organizing Committee, gave a report on the International Conference on Aniridia, that is to be held in Oslo from the 8th to the 10th of June 2012. The program is almost complete, with the participation of among the world’s most important medical experts on aniridia. They will be discussing key issues to improve the knowledge of the disease and the treatment of patients.
On Sunday, the Board meeting discussed the issues concerning the development of the federation and adopted the logo. This session confirmed that Aniridia Europe can rely on the work and commitment of a lot of people in different countries, who have accepted to undertake the completion of tasks for the federation, over the next few months.
Time was also dedicated towards the creation of a Scientific Committee, which will assist the Federation in developing a platform for cooperation between the representatives of patients and researchers and clinics working on aniridia and related conditions.
A students exchange project, proposed by the Spanish association, was also approved and will be developed in the near future.