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Aniridia Network @aniridianetuk.bsky.social · 2d

Our free online #aniridia conference is on at 1pm Saturday, 1 November UK time.
Don't miss the talks, chance to ask questions, AGM and conversation afterwards
Get details at aniridia.org.uk/conference/

Aniridia Network @aniridianetuk.bsky.social · 2d

'you have been invited to vote in the election "Aniridia Network trustee election 2025"'
That's the subject of the 21 September email to members, with your ballot on re-appointing Andy as one of our trustees.
Check your spam folder or ask us to resend it to you.
Polling closes at the end of today!

Aniridia Network @aniridianetuk.bsky.social · 4d

AFTER PARTY: Stick around after our conference this Saturday afternoon for informal chat with patients and parents affected by #aniridia.
The event starts at 1pm Saturday 1 November.
Get details at aniridia.org.uk/conference/ #ANUKconf

Aniridia Network @aniridianetuk.bsky.social · 6d

AGM: Our annual general meeting is this weekend.
Come to hear the charity's annual report and quiz its leaders.
Trustee election online voting deadline is Friday.
Conference starts: 1pm Saturday 1 November.
Sign up at aniridia.org.uk/conference/ #aniridia #ANUKconf

Andy Baghurst presenting at lecturn in front of Aniridia Network banner

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Aniridia Network @aniridianetuk.bsky.social · 13d

"Train station maps for visually impaired people" - an online lightning talk by Emily Nash, a person with aniridia studying at @CovUni, is part of our Conference & AGM grom: 1pm 1 November.
Details and sign up at aniridia.org.uk/conference/ #aniridia #ANUKconf

Aniridia Network @aniridianetuk.bsky.social · 19d

WEBINAR: "Exploring PAX6 related gene regulatory networks & its role in the developing brain" by Samuel Heczko & Dr Calvin Chan, @EdinburghUniversity
Part of our Conference & AGM from: 1pm Saturday 1 November.
Book a spot and time in your diary at aniridia.org.uk/conference/ #aniridia #ANUKconf

Aniridia Network @aniridianetuk.bsky.social · 24d

WEBINAR: "Privilege, Protest. Power" by Elliott Lee, a 25-year-old with aniridia.
Part of our conference from: 1pm Saturday 1 November.
Sign up to take part at aniridia.org.uk/conference/ #aniridia #ANUKconf

Elliott Lee, a person with blue hair, glasses and a rainblow bag, standing behind a polling station sign.

Aniridia Network @aniridianetuk.bsky.social · Oct 3

Q&A about aniridia, particularly together with glaucoma, with Mr John Brookes, @Moorfields Eye Hospital.
From: 1pm Saturday 1 November. Register for a place and to submit your queries at aniridia.org.uk/conference/ #aniridia #ANUKconf

John Brookes, man wearing glasses and suit

Aniridia Network @aniridianetuk.bsky.social · Sep 27

TALK: "How PAX6 gene deficiency affects your body" by consultant ophthalmologist in genetic eye disease, Professor Mariya Moosajee @mariyamoosajee, Moorfields Eye Hospital @Moorfields & @UCLeye.
From: 1pm 1 November aniridia.org.uk/conference/ #aniridia #ANUKconf

Aniridia Network @aniridianetuk.bsky.social · Sep 21

Aniridia Conference & AGM: online, Saturday 1 November 2025.
A great mix of patient and professional speakers
Get details and book your place now at aniridia.org.uk/conference/

Conference

Our next event will be online,1-4pm Saturday 1 November 2025. We have put together a great line up of speakers, to talk about a plethora of aniridia related themes online: from personal experiences…

aniridia.org.uk

Aniridia Network @aniridianetuk.bsky.social · Sep 21

Your opinions are needed on the new aniridia factsheet by
@rnib.bsky.social
Help us make it better for people seeking information in future by responding to our questionnaire.

Shape the RNIB aniridia factsheet

We have an opportunity to make what RNIB publishes about aniridia as good as possible. They want your valuable input on their online information. Read and critique it. What is needed RNIB maintains…

aniridia.org.uk

Aniridia Network @aniridianetuk.bsky.social · Sep 16

Meet Tierney, our Volunteer of Year, for wrangling speakers and hosting so well at our online Conference 2024.
(Have you signed up for the 2025 event yet?)

2025 Volunteer Awards

We would be nothing with the lovely people who use their skills in their spare time to do our charitabke deeds. We are very appreciative of the efforts of all our volunteers and hence what they get done for our beneficiaries. To recognise particular individuals’ input, we created an annual award scheme. Winners get a certificate and a £25 shopping voucher.

aniridia.org.uk

Aniridia Network @aniridianetuk.bsky.social · Sep 7

International WAGR Syndrome Association (IWSA) held #WAGRweekend in the UK. We went along to speak with people and fly our flag. Nearly everyone with WAGR has aniridia. It was a wonderful event with lots of families enjoying coming together.

WAGR Weekend 2025

Several of our members affected by WAGR enjoyed meeting in Sussex recently Parents Aaron and Michelle brilliantly organised the 2 day event with International WAGR Syndrome Association (IWSA). Aniridia Network trustee James went along to speak with people and fly our flag. Nearly everyone with WAGR has aniridia.

aniridia.org.uk

Aniridia Network @aniridianetuk.bsky.social · Aug 31

Details of what our officials, members and supporters have been up to and our finances are in our Annual Report 2024/25.
Thanks to great efforts by everyone who involved with these achievements.

Annual Report 2024-2025

Read details of what our officials, members and supporters did as well our finances between 1 April 2024 and 31 March 2025 in the Aniridia Network Annual Report for 2024/25. Key points After a year with none, 2 people did fundraising plus a legacy donation Several useful events: meetups, conference and leadership academy Moved from Twitter/X to Threads and BlueSky…

aniridia.org.uk

Aniridia Network @aniridianetuk.bsky.social · Aug 22

At the @EngineRoomTottenhamHale community centre/church there’s an artwork by @GraemeEvelyn where the centre is reminiscent of an eye with the rare visual impairment aniridia.
Its a contemporary, hand carved, painted relief sculpture 5x3 metres.
More details at graemeevelyn.com/new-major-pr...

Artwork made up of black lines and coloured shapes. At its centre is a white background set of concentric ovals, and a black circle resembling an eye with aniridia

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Aniridia Network @aniridianetuk.bsky.social · Aug 20

A big thank you to Lyn for raising £150 for our charity by opening her beautiful garden to visitors for a day.

Aniridia Network @aniridianetuk.bsky.social · Aug 18

The Aniridia Network AGM will be held online on the afternoon of 1 November 2025 as part of our annual conference.
We're looking forward to seeing you there.

Annual General Meeting 2025

The Aniridia Network AGM will be held online on the afternoon of 1 November 2025 as part of our annual conference. We're looking forward to seeing you there.

aniridia.org.uk

Aniridia Network @aniridianetuk.bsky.social · Aug 17

Your opinions are needed on the new aniridia factsheet by @RNIB. Help make it better for people seeking information in future

Shape the RNIB aniridia factsheet

We have an opportunity to make what RNIB publishes about aniridia as good as possible. They want your valuable input on their online information. Read and and critique it. What is needed RNIB maintains details on its website about various eye conditions. These resources are often the first point of contact for individuals, families and professionals seeking reliable information to answers queries.

aniridia.org.uk

Aniridia Network @aniridianetuk.bsky.social · Aug 6

Glen and his mum have aniridia and live together.
This is the 1st or 3 deeply touching posts about the impact on both of them of her further sight loss and declining mental health.

Glen @welleyenever.com · Aug 3

This week I'm opening up about what's been going on lately, as my blind, elderly mother is struggling with her declining health, and as her carer I'm finding it hard to cope as well. So this first post is about her physical health, including falls and sleep issues.
welleyenever.com/2025/08/03/c...

Caring For Mum – Part 1 – Physical Health

I’m an unpaid carer for my mother and lately we’ve been struggling to cope. We need help. It sounds like I’m introducing myself at some kind of group therapy session. But then thi…

welleyenever.com

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Aniridia Network @aniridianetuk.bsky.social · Jul 27

It's not an isolated case as it is based on official guidance about 'Fabricated or Induced Illness' #FII: bilson.org.uk/home/fii_ope...
#FII

FII – When Safeguarding Harms | FII – When Safeguarding Harms – Professor Andy Bilson

bilson.org.uk

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Aniridia Network @aniridianetuk.bsky.social · Jul 27

Truly terrifying to hear the experience of members of our UK community. Elly, mum to Ella who has WAGR, was separated from her daughter for months and had to fight to clear her name of allegations.
podcasts.apple.com/ng/podcast/w...
Our hearts go out to Elly, James, Ella and everyone else involved.

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Aniridia Network @aniridianetuk.bsky.social · Jul 17

Aniridia Network members can ask questions to us and a range of doctors by contacting our Medical advice service. We are delighted that our main experts are now Mariya Moosajee and John Brookes.

New Medical Advisors

We have appointed two distinguished medical experts to continue our support for the aniridia community. Mr John Brookes and Professor Mariya Moosajee are now our medical advisors, ready to respond to enquiries from our members and their families. Both are consultant ophthalmic surgeons, experienced at treating adults and children with aniridia. They work at Moorfields Eye Hospital that many with aniridia in the UK attend.

aniridia.org.uk

Aniridia Network @aniridianetuk.bsky.social · Jul 13

On behalf of all her visually impaired patients, many with aniridia, we thank Melanie for her years of dedication and service. We wish her very well.

Thanks to our retiring Medical Adviser Melanie Hingorani

Our long-time go-to for all medical queries, Melanie Hingorani, has retired from working as a consultant at Moorfields Eye Hospital and with us too. Her career had a focus on engagement and quality in eye healthcare, including answering our members' complex questions. We first heard of and appointed Melanie as our Medical Adviser on the recommendation of our Patron Veronica van Heyningen…

aniridia.org.uk

Aniridia Network @aniridianetuk.bsky.social · Jul 3

UK doctors and scientists interested in #aniridia. We have a #grant for you cofunded with @fightforsight.bsky.social.
Application deadline 16 July 2025.
aniridia.org.uk/2025/06/03/a...
Please share.
#MedicalResearchFunding #ResearchGrants #RareDiseaseResearch #SightLossResearch #PAX6

Apply for our 2nd grant for UK aniridia research

Apply for a £15k grant to collect preliminary/pilot data for later research into congenital aniridia.

aniridia.org.uk

Aniridia Network @aniridianetuk.bsky.social · Jun 21

To mark Aniridia Day, Vision For Tomorrow Foundation in the USA have launched an amazing map of doctors in America who experience with aniridia that people there can contribute to.
visionfortomorrow.org/aniridia-car...
visionfortomorrow.org/aniri…
Want this in the UK+Ireland? Who'd you recommend?

Map to USA with blue pins mostly on the east coast