Aniridia Network

06/10/2026

Did you get genetic test results for yourself or your children in a good or a bad way? The NHS South East Genomic Medicine Service have a short survey about your experience.
They want to hear the positive, the challenging and everything in-between. The more feedback they get, the more improvements they can make.
Take part at the link in the first comment.

04/10/2026

Karsu’s story – The beginning of our aniridia journey

When your child has a rare condition, knowing that you are not alone makes a real difference. Seeing that another mother or father once asked the same questions you are asking today reminds you that your child’s future is about much more than medical reports and test results.
https://aniridia.org.uk/2026/10/04/karsus-story-the-beginning-of-our-aniridia-kjourney/

29/09/2026

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

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

29/09/2026

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!

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

15/09/2026

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/

10/09/2026

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?

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…

05/09/2026

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.

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…

05/08/2026

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

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…

03/08/2026

News of the 'RAFT' cornea treatment research at

New clinical trial data suggest that RAFT-OS transplant offers a potential regenerative treatment strategy in advanced ARK.

02/08/2026

Good speed and donations to Leigh and Paul