By Eleanor from Ireland
Three weeks ago I went to the Aniridia Network UK Meeting 2016 in London, it was my first time and I thoroughly enjoyed meeting people with the same eye condition as myself.
I had never before met anyone with aniridia!
I have come away feeling it would be great if such a group could meet on a yearly basis in Ireland, obviously we would have a much smaller numbers but it would be great to start up such a group or network. Peer support is so important especially for parents of young children with the eye condition group support is excellent
If there is anyone with the aniridia in Ireland, I would really very much like to talk to you and see how we could move forward in starting such a group, perhaps within the next 6 months.
I am fairly confident that we could find a suitable venue, The ANUK venue was ideal and very well lit.
I would be in no doubt that we could approach a consultant from the Eye & Ear hospital in Dublin to speak to us and I am sure we could enlist the support of associations concerned with visual impairment.
Finally, I would like to invite Aniridia Network UK to advise on how they setup their conference as I have been so impressed and really want to get such a group up and running in Ireland.
I spoke to James who is one of the ANUK Trustees. He said “We really welcome members from the Republic Of Ireland but it has always been our goal to establish some kind of national group there. We currently have 7 household members north of the border and 12 in the south, containing people with sporadic and familial aniridia or WAGR. We would be delighted to support an event, to bring them together, in whatever way we can.”