Conference

Our next event will be online, 1-4pm Saturday 28 November 2026. We have put together a great line up of speakers, to talk about a plethora of aniridia related themes online: from personal experiences to cutting edge research.

Come along and meet others with aniridia, their families, and the fantastic medical and scientific experts pushing forward our knowledge on aniridia.

Agenda

Woman at a laptop displaying a slide saying Aniridia Network Conference
  • 13.00 Session 1
    • Welcome
    • Life with aniridia plus being and services available from a RNIB ECLO
      Ben Rendle, person with aniridia and Royal National Institute for the Blind, Eye Clinic Liaison Officer Service Manager
    • Life with aniridia and the changing landscape of benefits in the UK
      Veda Petre, person with aniridia and disability rights advisor
  • 14.10 BREAK
  • 14.20 Session 2
    • Call to participate in research: “What is the impact on family members of the diagnosis of aniridia in a child, and what would help?
      Harriet Hawes, MSc Genetic Counselling student from Cardiff University
    • Annual General Meeting 2026 – Aniridia Network trustees
    • Developing A New Therapy for Aniridia
      Amyleigh Watts, Postdoctoral Research Associate, University of Liverpool
    • Corneal Transplantation to Treat Aniridia Associated Keratopathy: Long Term Outcomes from UK Transplant Registry
      Professor Francisco Figueiredo, Consultant Ophthalmologist, Royal Victoria Infirmary
  • ~16.00 Open discussion and social after party

As with all our recent conference sessions we aim to record and publish these talks later on the Aniridia Network our YouTube channel.

Sign up to take part

From Patient to Professional: My Journey with aniridia and RNIB ECLO Services
Ben Rendle, Person with aniridia and Royal National Institute for the Blind, Eye Clinic Liaison Officer Service Manager

Living with aniridia has brought both challenges and opportunities throughout my life. In this talk, I will share my personal journey, from growing up with a rare eye condition to building a successful career in eye care services, becoming a parent, and finding ways to thrive alongside sight loss.

I will reflect honestly on the barriers I have faced and the support that has helped me succeed. I will then draw on my professional experience to explain the support available through Eye Care Liaison Officer services and how these services can help people affected by aniridia and their families navigate the practical and emotional impact of sight loss.

Ben has lived with aniridia throughout his life and brings both personal and professional perspectives to eye care. Based in East London his work focuses on improving patient experiences, ensuring access to support, and championing inclusion for people with sight loss. He is a parent and based in East London.
@benrendle95 Instagram
Ben Rendle, LinkedIn

Life with aniridia and Coping with the changing landscape of benefits in the UK
Veda Petre, Person with aniridia / Welfare benefits & disability rights advice worker

Veda

A brief introduction about my life with aniridia. Followed by a talk about health-related benefits for children and adults around the UK, recent changes and future reforms.

I have sporadic Aniridia. I have had two guide dogs and I am hoping to get a third one. I studied business and finance and worked in retail catering management. Then I studied law and became an advice worker.

Call to participate in research: “What is the impact on family members of the diagnosis of aniridia in a child, and what would help?
Harriet Hawes, student of MSc Genetic Counselling, Cardiff University

Harriet is recruiting parents and other family members for interviews about their experiences. She will explain what the project involves and how you can take part. This is a fantastic opportunity for you to directly shape research that could improve support for families.

Annual General Meeting 2026
Aniridia Network trustees

At the annual general meeting the trustee’s will seek approval of the minutes of last year’s meeting, then present highlights from the charity’s annual report, giving time for questions and comments. The results of the trustee election will also be announced.

Developing A New Therapy for Aniridia
Amyleigh Watts, Postdoctoral Research Associate, University of Liverpool

Aniridia occurs because the eye does not make enough of the important PAX6 protein needed to maintain eye health throughout life. We are developing a treatment that uses something called short-activating RNAs (saRNA) to act like a volume control, turning up the body’s remaining working copy of the PAX6 gene so it can produce more protein. By addressing the underlying cause of aniridia, our long-term goal is to create a treatment that slows the progression and helps preserve vision and corneal health for longer.

Amyleigh is researcher in the Hamill lab. She holds a PhD in immunology, and her research focuses on developing short-activating RNA as a new therapy for aniridia.

Corneal Transplantation to Treat Aniridia Associated Keratopathy: Long Term Outcomes from UK Transplant Registry
Professor Francisco Figueiredo, Consultant Ophthalmologist, Royal Victoria Infirmary

Professor Figueiredo specialises in corneal surgery and related diseases, cataract surgery, corneal transplantation, blepharitis, dry eye pterygium and red eye. He is also an Honorary Professor in Ophthalmology at Newcastle University. His main research interests are in corneal diseases, stem cells, corneal transplantation, keratoconus, dry eye and ocular allergy.
Professor Figueiredo research | Faculty of Medical Sciences | Newcastle University

Sign up to take part in the conference

Our events are aimed at people who have aniridia and their families, plus interested professionals in the UK.

Videos of past conference presentations
Woman at lectern
Dr Ngozi Oluonye

Statements from previous events – people affected by aniridia tell us what they felt the best part of our conferences were:

  • other people, having never met anyone else with aniridia.
  • the social sessions worked really well as I find it hard to approach and speak to people I don’t know.
  • benefiting from and meeting the speakers, experts in visual impairment, was very helpful for my children with their development and education needs.
  • being with others with the same visual impairment – very reassuring and supportive.
  • so much information that you can’t easily find it from other services.
  • meeting and relating to a group of people with the exact same condition/conditions as myself, and hearing their experiences

Being there makes me feel:

  • there are so many opportunities for my daughter out there.
  • better informed, part of a great community, more hopeful
  • uplifted and proud to be part of Aniridia Network
  • really positive and thoughtful.
  • positive, connected, hopeful, informed, gave me direction

To people who have not come before I say:

I highly encourage new parents to attend as it gives them a place to express their worries and get more answers than any other service.

come to meet people with same conditions/relations with people with aniridia, consultants/doctors and basically enjoy yourselves. It’s worth coming as it’s interesting, informative and enjoyable.

Past conferences