Aniridia Network

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.

[Aniridia Network @AniridiaNetUK]

We're also on Threads at
https://t.co/ssQui88DnZ
and Instagram at
https://t.co/FR5AM6K9Pc

[Aniridia Network @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.

https://t.co/hHWVsbYMPo

[Aniridia Network @AniridiaNetUK]

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:

https://t.co/KYpTLMxdCG

[Aniridia Network @AniridiaNetUK]

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.

https://t.co/reyIWWn7L1

[Aniridia Network @AniridiaNetUK]

Here we have another presentation from this year's #ANUKConf, as Vivienne Kit discusses her research into retinal detachments amongst #Aniridia patients:
https://t.co/qZedGlbFtK

[Aniridia Network @AniridiaNetUK]

Continuing with the presentations from this year's online conference, we've now published the video and transcript from our Annual General Meeting:
https://t.co/xMQ78fWFJU

[Aniridia Network @AniridiaNetUK]

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.
https://t.co/L4eE1c2BDq

[Aniridia Network @AniridiaNetUK]

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:
https://t.co/zaR1Vke3ZY

[Aniridia Network @AniridiaNetUK]

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.

https://t.co/BuVggvZT98

[Aniridia Network @AniridiaNetUK]

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!
https://t.co/L4eE1c2BDq

[Aniridia Network @AniridiaNetUK]

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:
https://t.co/MKLIOxmDNN

[Aniridia Network @AniridiaNetUK]

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.
https://t.co/k6HVRDENAa

[Aniridia Network @AniridiaNetUK]

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):

https://t.co/YFQG0JFJQx

[Aniridia Network @AniridiaNetUK]

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]

[Wales Gene Park @WalesGenePark]

📢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: https://t.co/YgGAVW3Mrk @GenomicsWales

[Mr brightside @stevo1862]

@thesaviour @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.

[RestoreVision @restorevis_eu]

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➡️https://t.co/cBAZ5LZbKl

[Aniridia Network @AniridiaNetUK]

Our trustee Andy raising awareness of aniridia at a local school for @AniridiaDay

[Milton CE Primary School @SchoolMilton]

A fantastic assembly from Andrew to discuss what life with Aniridia is like! #aniridia @AniridiaNetUK @RNIB

[Aniridia Network @AniridiaNetUK]

@EBrothersLabour, who has aniridia, was a Labour candidate in the recent general election but came 4th (and similarly previously in south London).
Find out more about them.
https://t.co/XLGms6wUtL

[Aniridia Europe Federation @AniridiaEurope]

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! 👉https://t.co/tttUMz0gn7 #AniridiaDay

[SRSB and RSS @SRSBCharity]

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: https://t.co/K92sHY4VbS