In 2013 Veronica van Heyningen became Aniridia Network Patron. Having helped to appoint a new patron she reflects on the progress we’ve made together.

Ten years ago when I took up the role of Patron in this wonderful aniridia support group which has grown and matured greatly over that time span. It has been an honour and privilege to witness, and occasionally help along, the progress of the Aniridia Network. 

Because I am a scientist, not a clinician, one of the first things we set out to do was to establish a panel of clinicians with a broad spectrum of expertise relating to the wider experience of aniridia. The team has been led by Dr Melanie Hingorani and additional experts have been added since then. The aim is to allow any of you to ask questions at any time, through a single email address and many have done soand received guidance from the panel. 

Knowledge about the diverse effects of aniridia has increased significantly since the discovery of the major implicated gene known as PAX6. It has been wonderful to see the community contributing to and benefitting from the growth of the insights into the complexity and variability of the condition. Understanding the details is very much the first step to developing better therapeutic and management options. The sharing of experiences and strategies by Aniridia Network members has also been a great pleasure to witness. 

There have been many new initiatives by all of you, for all of you. I recall how excited and impressed I was when I first heard about the Pupil Passports to help deal with schools and education. 

The emergence of Aniridia Europe and the evolution of Aniridia North America have made raised the profile and engagement of Aniridia Network with the rest of the world. The firm establishment of the Rare Disease UK network has helped to strengthen support and visibility too. 

It has been great to observe all the positive changes including the setting up of Aniridia Network as a fully-fledged registered UK charity. 

I loved attending the annual meetings and also some Aniridia Europe and Aniridia North America meetings. It has been wonderful to meet many of you and to hear your stories and celebrate your many fantastic achievements individually and together. 

Because of all this growth and evolution, it seemed timely to bring in a wonderful highly eminent new patron. A number of you will know Tony Moore as he has looked after many people with aniridia in Cambridge, at Moorfields, Great Ormond Street and San Francisco. He is a fantastic ophthalmologist and superb diagnostician who has contributed greatly to our understanding of aniridia and other genetic eye diseases. He has been a longstanding, highly valued collaborator in our lab-based discoveries. We are co-authors on 25 scientific papers.

Although I am getting older and have growing family caring duties, I shall remain a Patron, but it will be a great to have Tony on board too.