By Claire
My daughter Laura, who has aniridia, and I set off for the conference early on Friday 3rd June to join other families seeking more information about this rare condition that many health professionals are unaware of. How heartening to meet so many aniridia patients from 9 months to over 60 years of age, all with their own unique stories to tell!
The conference was held in the beautiful San Juan Complex, hotel and conference centre with activites available for all ages. The organisation was excellent, seminars were divided up into those all and those for professionals only. At those timese patients and families were given a coach trip to explore Alicante. There were activities for younger children at any time a seminar was taking place.
Friday afternoon was filled with ophthalmic tests and consultations. A genetic consultation was available to all patients too. Laura and I found this invaluable for her to go ahead with cataract surgery in the UK.
The most valuable part of the whole experience was to realise that aniridia patients and their families are not alone. Aniridia may be a rare condition but it is not uncommon, just widespread! Sharing information and experience with other families from different countries made us realise that there are many of us. Although it was a European event many of the speakers, whether health professionals or scientists, had travelled to Alicante from Canada and USA. The seminars gave us news on the latest research, techniques involved and the support available.
We all met new friends, shared stories of our experiences and thoughts, shared meals and laughed and supported each other promising that we would meet up again in Sweden at the 7th Anirdia European Conference in 2024.
I cannot express how lucky we were to have found the UK Aniridia Network just months before the conference and that they have given us such great support and knowledge.
Aniridia Network 