Aniridia Network

Do you or your dad have aniridia?
Got a fun or touching story to tell about your dad relating to aniridia?
We want to hear it:
Tell it on the Aniridia Day group in text and pictures or on video to celebrate your !
Share it to your own feed for your friends and family to see.

As today is both and Aniridia Day, we’re all telling stories about both subjects.

Today is Aniridia Day 💙
Together, we raise awareness, strengthen support, and advance care for people living with aniridia.

See potential. Support possibilities. Protect vision. Intervene wisely.

By improving knowledge, encouraging collaboration, and advocating for better care, we can help build a brighter future for everyone affected by aniridia.

TODAY Medical professionals webinar on aniridia.
Part of activities for Aniridia Day

𝐀𝐧𝐢𝐫𝐢𝐝𝐢𝐚 𝐢𝐬 𝐦𝐮𝐜𝐡 𝐦𝐨𝐫𝐞 𝐭𝐡𝐚𝐧 𝐭𝐡𝐞 𝐚𝐛𝐬𝐞𝐧𝐜𝐞 𝐨𝐟 𝐚𝐧 𝐢𝐫𝐢𝐬 (𝐭𝐡𝐞 𝐜𝐨𝐥𝐨𝐮𝐫𝐞𝐝 𝐩𝐚𝐫𝐭 𝐨𝐟 𝐭𝐡𝐞 𝐞𝐲𝐞).

Caused primarily by mutations in the PAX6 gene, it is a lifelong condition that can affect multiple parts of the eye, leading to challenges such as keratopathy (damage to the cornea), glaucoma (increased pressure that can damage the optic nerve), cataracts (clouding of the eye’s natural lens), foveal hypoplasia (underdevelopment of the central retina responsible for sharp vision), and other retinal abnormalities.

𝘉𝘶𝘵 𝘵𝘩𝘦𝘳𝘦 𝘪𝘴 𝘎𝘳𝘰𝘸𝘪𝘯𝘨 𝘏𝘖𝘗𝘌.

Advances in regenerative medicine, limbal stem cell therapies (treatments that help repair the eye’s surface), and emerging gene-based approaches are opening new possibilities for individuals living with Aniridia.

On World Aniridia Day, the 𝐎𝐜𝐮𝐥𝐚𝐫 𝐆𝐞𝐧𝐞𝐭𝐢𝐜𝐬 𝐈𝐧𝐭𝐞𝐫𝐞𝐬𝐭 𝐆𝐫𝐨𝐮𝐩 & Centre For Unknown and Rare Eye Diseases is bringing together three globally renowned experts:

🟥 𝐏𝐫𝐨𝐟. Neil Lagali – Internationally recognised researcher in corneal diseases, regenerative medicine, and ocular surface disorders.

🟩 𝐏𝐫𝐨𝐟. Dominique Bremond-Gignac – Global expert in paediatric ophthalmology and rare eye diseases, with extensive work on PAX6-related ocular conditions.

🟥 Dr. Virender Singh Sangwan – Pioneer of the SLET (Simple Limbal Epithelial Transplantation) technique and a leading innovator in ocular surface reconstruction and regenerative ophthalmology.

The session will be moderated by Dr. Shailja Tibrewal and Dr. Abha Gour, distinguished specialists from Shroff’s Charity Eye Hospital.

𝘑𝘰𝘪𝘯 𝘶𝘴 𝘰𝘯 21𝘴𝘵 𝘑𝘶𝘯𝘦, 𝘢𝘴 𝘸𝘦 𝘤𝘦𝘭𝘦𝘣𝘳𝘢𝘵𝘦 𝘞𝘰𝘳𝘭𝘥 𝘈𝘯𝘪𝘳𝘪𝘥𝘪𝘢 𝘋𝘢𝘺 𝘣𝘺 𝘣𝘳𝘪𝘯𝘨𝘪𝘯𝘨 𝘵𝘰𝘨𝘦𝘵𝘩𝘦𝘳 𝘴𝘤𝘪𝘦𝘯𝘤𝘦, 𝘤𝘭𝘪𝘯𝘪𝘤𝘢𝘭 𝘦𝘹𝘱𝘦𝘳𝘵𝘪𝘴𝘦, 𝘢𝘯𝘥 𝘩𝘰𝘱𝘦 𝘧𝘰𝘳 𝘵𝘩𝘦 𝘧𝘶𝘵𝘶𝘳𝘦 𝘰𝘧 𝘢𝘯𝘪𝘳𝘪𝘥𝘪𝘢 𝘤𝘢𝘳𝘦.

Webinar Link: https://lnkd.in/d46Unnjp

We are proud to have helped organise the recent European Aniridia Leadership and Collaboration Academy for 12 emerging volunteers affected by aniridia. It developed their skills, confidence and connections to strengthen the global aniridia community and create its future leaders.
Read the full review of it:

Review of EALCA 2026 – 8th European Aniridia Conference European Aniridia Leadership & Collaboration Academy (EALCA) 2026Building the Next Generation of Leaders in the Aniridia CommunityFrom 17–19 April 2026, alongside the 8th European Aniridia Conference in Sofia, Bulgaria, 12 young people and emerging leaders from across Europe and beyond gathered fo...

The recent European Aniridia Conference in Sofia discussed future treatments, vision preservation, and quality of life.
Read the full review.

🌍✨ The Most Significant Reasons for Hope in Aniridia – Insights from the 8th European Aniridia Conference (EAC)
For many years, aniridia care focused mainly on managing symptoms. But research presented at the 8th EAC shows something exciting: the field is moving toward targeted therapies that may preserve vision, improve quality of life, and address underlying disease mechanisms.
Some of the most hopeful developments include:
🧬 Stem-cell therapies becoming reality – including approaches that have already shown encouraging long-term results in restoring the eye surface.
👁️ Personalised medicine for PAX6-related aniridia – using genomic technologies and patient-derived cells to tailor future treatments.
🔬 Corneal organoids (“mini corneas”) – helping researchers test therapies faster and better understand disease progression.
💊 New pharmacological approaches – including read-through therapies, insulin eye drops, and anti-fibrotic treatments being explored for corneal health.
🧪 Gene-based therapies – early research is investigating ways to increase PAX6 activity and potentially modify disease progression.
💚 Improved glaucoma care, earlier intervention, and recognition of aniridia as a whole-body condition are also expanding opportunities to improve outcomes and quality of life.
Perhaps the strongest reason for optimism is that multiple approaches are advancing simultaneously — regenerative medicine, gene-based strategies, precision medicine, and better supportive care.
Progress takes time, but the direction is clear: aniridia research is moving from understanding disease toward improving patient outcomes.
Read the full summary here: https://aniridiaconference.org/eac2026/the-most-significant-reasons-for-hope/

ERN-EYE Webinar - Congenital aniridia PAX6 and differential diagnosis - ERN-EYE ERN-EYE Webinar - Congenital aniridia PAX6 and differential diagnosis Date & time Tuesday 23 June 2026, 6.00 pm CEST. Moderators Pr Dominique Bremond-Gignac & Dr Susana Noval Programme & Speakers Congenital aniridia PAX6 related phenotype overview, Pr Dominique Bremond-Gignac MD, PhD, Department of....

Sign up at https://aniridia.org.uk/2026/06/14/parenting-and-aniridia-online-meet-up/