European Aniridia Conference 2021
The biennial European Aniridia Conference, a meeting combining excellence in aniridia research and clinical practice plus patient engagement, was held online in July, broadcast from the UK. The meeting had 347 registrations from 53 countries, 45 speakers and hosted around 100 participants at each session.
Professionals such as ophthalmologists, researchers, vision scientists and geneticists were the primary delegates. Together they set themselves on a productive path to developing new disease management and therapies. This helps to accelerate the development of better treatments and hugely improves patient care.
Understanding the rare condition aniridia is challenging due to the highly scattered patient population at 1 in 47,000 , its highly variable impact on sufferers and the complications of linked conditions.
By sharing the insights of those developing treatments and those living with complex visual impairment, the event’s goal is to upskill delegates, prevent sight loss and deal with the other effects of aniridia. People who have aniridia and their relatives are encouraged to attend.
The content of the conference was managed by a team of highly distinguished experts from Moorfields Eye Hospital, UCL Institute of Ophthalmology and NIHR Moorfields Biomedical Research Centre. Working on the project were Professors Mariya Moosajee, Julie Daniels and Stephen Tuft, Ophthalmic Surgeon and Lecturer Sajjad Ahmad, Developmental Paediatrician Dr Ngozi Oluonye, Dulce Lima Cuhna, PhD, Philippa Harding, PhD and Vivienne Kit.
They were joined by presenters from around the world including Bulgaria, Canada, France, Italy, Lithuania, Norway, Russia, Spain, Sweden, UK, and USA. Together they offered an excellent range of knowledge and research for digest and panel discussion.
A recording of the event can be viewed in full on the aniridia conference website.
The conference is organised and brought to realisation by volunteers working on behalf of Aniridia Network
Aniridia Network, based in the UK, is a charity whose focus is on providing a network for people with aniridia and their families to communicate not only with each other but also with doctors and teachers. The aim is to help people to be confident, feel supported and to be well informed about aniridia and its related issues, to improve both quality of life and treatment.
Please take a look at their aniridia factsheet.
The conference is supported by, and included presentations by, Aniridia Europe
Aniridia Europe is a continent-wide network hub, connecting people with information and community. Their whole website is translated into 16 languages making it accessible to a variety of people.
They have a broad scientific committee whose aims include involving patients in research planning and generating new research proposals. The resources available range from information for teachers and sports coaches for the integration of children with aniridia into lessons to expertly collated links for clinicians to follow for guidelines and research.
Feedback from attendees
“I very much liked that hearing about science was interspersed with patient experiences as well as other aspects like the passport or the Erasmus program to integrate students with vision difficulties. I also liked that after each scientific session the research was summarized in lay terms. I thought it was a well thought through conference.”
“It was a fantastic, high level and interesting conference! Although it was digital, the presentations were high quality and all panel discussions were really interesting!”
Ivana Kildsgaard – Sweden
The participants and delegates have formed new ideas and relationships which they will take with them into the future.
Aniridia Factsheet Aniridia Factsheet
Aniridia Conference https://2020.aniridiaconference.eu/
Aniridia Europe https://www.aniridia.eu/
Aniridia Network https://aniridia.org.uk/
UCL Institute of Ophthalmology https://www.ucl.ac.uk/ioo/
Moorfields Eye Hospital https://www.moorfields.nhs.uk/