Aniridia Network

Read details of we did as well our finances between April 2025 and March 2026 in the latest Aniridia Network Annual Report:
* Reviewed RNIB factsheet on aniridia
* Supported members with enquiries on range of topics
* Successful online conference
* Held popular meet-up events
* Attended WAGR Weekend
* Offered research grant but had no applications
* Continued growth of membership and social media followers
* Lack of volunteers still a major problem
* Low income from special fundraising feats
* Invested savings to use interest for running costs

Annual Report 2025-2026 Read details of what our officials, members and supporters did as well our finances between April 2025 and March 2026 in the latest Aniridia Network Annual Report

Our next Conference and Annual General Meeting (AGM) of Aniridia Network, will be online on 28/11/2026.
Save the date. More details on speakers soon!

Annual General Meeting 2026 The Annual General Meeting (AGM) of Aniridia Network, a charitable incorporated organisation, will be held online on 28/11/2026.

WEBINAR: “Finding Your Way: A Parent's Guide to Rare Disease”
Midday 16 September

Join the NHS SE Genomic Medicine Service for the launch of this guide. Written by parents, for parents, it offers practical support, trusted resources and hope for families navigating a with a genetic cause.
Hosted by a Consultant and the parents/authors
https://southeastgenomics.nhs.uk/finding-your-way-a-parents-guide-to-rare-disease/

Soon we'll be seeking interviewees for a study into the effects of learning about aniridia from medical staff. Here's a preview by the the researcher.
https://aniridia.org.uk/2026/09/05/research-preview-what-is-the-impact-on-family-members-of-aniridia-diagnosis-in-a-child/
Do you have a story to tell them?

Research Preview: What is the impact on family members of aniridia diagnosis in a child? During our online meetup earlier this year to mark Aniridia Day and Father’s Day, we were given a preview of an important new research project. Harriet, an MSc Genetic Counselling student fro…

What is the impact on family members when a child is diagnosed with aniridia? An upcoming study aims to find out, and we want you to get involved! Here's a preview from our Aniridia Day meetup earlier this year. We will provide details on how to sign up very soon.

Research Preview: What is the impact on family members of aniridia diagnosis in a child? During our online meetup earlier this year to mark Aniridia Day and Father’s Day, we were given a preview of an important new research project. Harriet, an MSc Genetic Counselling student fro…

Lovely to hear of Grace's resilience, kindness, positivity and her shining light alongside having WAGR.

Grace wins Child of Sussex award Congratulations to Grace, who has WAGR and won the local Child of Sussex awards in June. She was nominated by her school, and then got through to the final 50 nominees. She won her category of Chil…

News of the 'RAFT' cornea treatment research at

RAFT‑OS Transplant Tied to Ocular Surface Gains in Advanced Aniridia-Related Keratopathy | www.PhysiciansWeekly.com New clinical trial data suggest that RAFT-OS transplant offers a potential regenerative treatment strategy in advanced ARK.

Good speed and donations to Leigh and Paul

Another father we heard from during our Aniridia Day meetup was Simon, who has aniridia as well as his son. So here he shares his experience from both sides, as a patient and a parent.

Empathising with my son – Raising a child with anirida when you have it too At our recent online meetup to mark Aniridia Day and Father’s Day, we heard from Simon, 43, who has aniridia and is bringing up a child with the same condition. In his talk he shared what it’…