Imagine that something that started as a call for community quickly grew into a full-fledged association. And look at all that we have achieved together with others, both in Norway and around the world! In 2003, Hilde Ravnanger Hansen started the association Aniridia Norway along with a handful of others. Little did she know that 20 years later, we would be celebrating the tremendous efforts put in by so many to establish Aniridia Norway as the strong organization it is today. As Hilde herself writes, «I am so grateful that there are always so many people who complement each other in a way that gives reason to believe that the entire Aniridia family, across borders in the world, will continue to make a difference so that the challenges of Aniridia and related conditions can become easier to manage.»

This describes an incredibly solid foundation to carry with us into the future!

This year’s gathering was scheduled to take place at Oscarsborg Fortress Hotel. After all the guests had arrived and settled into their barracks – yes, we actually got to stay in the real barracks! – it was time for dinner in the fortress itself. I spent the entire afternoon with wide (dark) eyes, absorbing the impressions because it was all so exciting. And the food was amazing too, truly excellent. A 20th-anniversary-worthy feast. There were many great conversations with old and new acquaintances.
On Saturday, it was time for the children to visit the aquarium in Drøbak! We quickly realized that it was a big deal for them, as they saw various fishes. For us adults, we were fortunate to have excellent speakers. Eivind Knudsen works as a lawyer in the Norwegian Association of the Blind and Partially Sighted. He guided us through a jungle of rights, both for adults in the workforce and our children’s rights. He also shared a wealth of knowledge about Personal Assistance Services (BPA). He received many good questions, and he answered each one. Next up was Berit Nordheim, whose presentation I believe many of us adults and young adults with aniridia could relate to. Perhaps she imparted some wisdom to both parents, relatives, and sparked thoughts among long-time attendees?

After lunch on Saturday, there was a guided tour of the fortress and free time to do as one pleased. We were lucky with the weather in Drøbak that weekend, and many took the opportunity to og swimming after the tour. The official anniversary dinner took place on Saturday in the main building of the hotel, and it was fantastic, just like the previous day’s meal. In addition, Chairperson Elin gave a wonderful speech, and specially invited guests received a small token of appreciation for their contributions. The social mingling throughout the evening is always the icing on the cake, with lots of experience sharing and laughter. It feels safe and good to gather with the aniridia family; if anyone knows what it’s like, it’s them.

The last session of presentations on Sunday was dedicated to our fantastic researchers, ophthalmologists, and opticians. Erlend Landsend shared many exciting (and quite a bit of new!) information about the user survey conducted some time ago. New discoveries have been made that will be worked on in addition to the symptoms already known. This is so exciting! We are extremely grateful to have so many competent people with expertise in the field. We hope they will continue to be with us for many years to come.
On Sunday after lunch, it was time to end the weekend and go our separate ways. It’s a little sad that we can’t be together longer, but at the same time, we have great faith that the people who were with us this weekend went home with their minds and hearts filled. We thank the founders of the association. We thank those who work every day to improve the lives of those diagnosed with aniridia. We thank everyone who was involved, including members, speakers, and professionals. We look forward to the next 20!