After the establishment of Aniridia Europe its board members met in Paris on 19 and 20 November 2011. It was a chance to meet face to face and also for new members from Germany and Bulgaria to meet us all for the first time.
We were lucky enough to receive a grant from EURODIS (the European Rare Disease Alliance) to help with the cost of funding the meeting. Aniridia Network UK received €300 of this to help us send a representative – our Chair, Katie Atkinson.
To begin with we all updated each other on the progress of our own organisations and swapped hints and tips on how to run an aniridia group. This was particularly useful for those who have just created an organisation or are trying to set one up. We then discussed the running of Aniridia Europe and how it will be funded. Each member organisation will be expected to contribute what they can but Aniridia Europe will also need to raise some funds of its own.
Next we received an update from Aniridia Norway about the medical conference on they will be holding in June 2012. It should be great opportunity for doctors and researchers to interact and learn from each other and stimulate an interest in aniridia amongst the medical community. The UK should be well represented with several British doctors and researchers being invited to speak.
On Sunday we reconvened to discuss how we can publicise Aniridia Europe and raise awareness of aniridia. We developed ideas for publicity materials such as leaflets and also discussed how to improve the Aniridia Europe website. Finally we discussed how we go about forming a scientific committee to help with our aim of encouraging more aniridia research across Europe.
For me it was great to see everyone again and to hear the stories from others – to know that we all face the same challenges but also to know that we are not alone in trying to overcome them.