UK charity (1176792) for people affected by #aniridia, a rare eye condition: absence of the iris. Symptoms are poor sight or blindness & sensitivity to light.
United Kingdom
Joined February 2010
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We're also on Threads at
threads.net/@aniridianetuk
and Instagram at
instagram.com/aniridianetuk/
In this first talk from our #ANUKConf last month, Professor @MariyaMoosajee explains how a deficiency in the #PAX6 gene doesn't just cause #aniridia, but affects other parts of the body as well.
aniridia.org.uk/2025/12/01/h…
Our final talk at this year's #ANUKConf was by Haya Hassan, who reflected on her experience attending the European #Aniridia Leadership Academy in Stockholm. You can watch the video and read the transcript here:
aniridia.org.uk/2024/12/23/t…
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Here's another talk from our #ANUKConf earlier this year, where Dulce Lima Cunha discusses her research into the initial changes in cornea cells that occur in #aniridia, using stem cells from patients, with the aim of finding suitable treatments.
aniridia.org.uk/2024/12/08/3…
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Here we have another presentation from this year's #ANUKConf, as Vivienne Kit discusses her research into retinal detachments amongst #Aniridia patients:
aniridia.org.uk/2024/11/19/r…
Continuing with the presentations from this year's online conference, we've now published the video and transcript from our Annual General Meeting:
aniridia.org.uk/2024/07/28/a…
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It's nearly time for our next London meetup! On Tuesday 5 November, we're having a get-together in Kensington after Sight Village, for patients and relatives affected by #aniridia. So do come and join us for an informal chat and a bite to eat.
aniridia.org.uk/2024/10/06/m…
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At our online #ANUKConf in July, Professor Martin Collinson updated us on his work to understand #corneal health, and the aim of developing drugs to prevent corneal disease in people with #aniridia. Check out the video here:
aniridia.org.uk/2024/10/25/p…
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The next talk from July's #ANUKConf was by Helen Campbell, who presented the results of her study into the psychosocial impact of deteriorating vision in people with #aniridia. Thank you to all of our members who took part in this research.
aniridia.org.uk/2024/10/19/r…
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In a few weeks time, on Tuesday 5 November, we'll be holding our traditional meetup after Sight Village in Kensington, for patients and relatives affected by #aniridia to socialise together. Come and join us for a bite to eat and some informal chit-chat!
aniridia.org.uk/2024/10/06/m…
The first talk at this year's #ANUKConf was given by Gayle Johnson, a Qualified Teacher for #VisionImpairment (QTVI) at Dorset Council. She discussed her work supporting children with #aniridia, including referrals, vision assessments and more:
aniridia.org.uk/2024/10/11/s…
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The final presentation from last year's #ANUKConf was a story of Hope and the importance of reaching out if you need help, through a case study by Permjit Bhachu from @FocusBirmingham of an individual who faced great hardship on their #SightLoss journey.
aniridia.org.uk/2024/10/04/f…
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While we get ready to share the presentations from this year's #ANUKconf, here's a talk from last year's event by Alyson Mountjoy from @APDSupportUK, about living with #AuditoryProcessingDisorder (#APD):
aniridia.org.uk/2024/10/01/l…
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This year's Sight Village event in Kensington is taking place on Tuesday 5 November, and as is tradition we will be hosting an #aniridia meetup nearby afterwards.
Exact details will be confirmed soon, but if you're interested in joining us, let us know at [email protected]
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Aniridia Network retweeted
📢Booking is LIVE for our next Public Virtual Genomics Café 🖥️🧬☕️ Free to attend & open to all, join to learn of cutting-edge topics in the field of Genomics research, as well as a lived experience of a genetic condition. Register here: ticketsource.co.uk/wales-gen… @GenomicsWales
Aniridia Network retweeted
@CommunityNotes Aniridia is a condition that causes babies to be born without irises (the colored part of your eye) in their eyes. Some babies born with aniridia are missing their entire irises — others only have part of an iris.
Aniridia Network retweeted
In June, the 7th European Aniridia Conference in Stockholm was key event for the aniridia community, spotlighting advancements in understanding and managing aniridia and related conditions. 👁️🗨️Read the patient-friendly summary of these insights here➡️bit.ly/3LD7S7P
Our trustee Andy raising awareness of aniridia at a local school for @AniridiaDay
A fantastic assembly from Andrew to discuss what life with Aniridia is like! #aniridia @AniridiaNetUK @RNIB
Aniridia Network retweeted
Let’s mark Aniridia Day and create a collective impact ! Here are a few ways you can join us in this campaign: Support AE projects, consider participating in research trials, raise awareness, volunteer. WE CAN DO IT TOGETHER! 👉aniridia.eu/about-us/support… #AniridiaDay
Aniridia Network retweeted
Awareness: Today is #AniridiaDay Aniridia causes a lack of irises (the coloured ring) in the eyes and poor vision from birth. You can read more about this rare medical condition on the Aniridia Network website: aniridia.org.uk/about-anirid…
Aniridia Network retweeted
On Aniridia Day 2024 we are happy to share news from our fellow association ANA , as they are launching EYEris, the Aniridia Patient Registry !
The registry will foster a better understanding of all aspects of the condition !
More info:
aniridiana.org/eyeris-anirid…
