Aniridia Network

How does living with a rare disease impact your daily life?

📣 Tell us in the new survey, available in 25 languages!

👉 Click here to have your say: http://tiny.cc/RB_DailyLife

UK based work on aniridia, showcased at the recent European Aniridia Conference

www.youtube.com

Re our conference yesterday: On behalf of all our members we say many thanks to all the speakers for their time and efforts put into presenting to us and the work that led up to it too.
A huge thank you also to Tierney for brilliantly volunteering to organise and host the conference, making the whole thing possible.

Recordings of the talks will be published on our YouTube channel in comig months.

Get in touch if you can play a part in next year's event!

Read details of what our officials, members and supporters did as well our finances between 1 April 2023 and 31 March 2024 in the Aniridia Network Annual Report for 2023/24. Key points Successful in-person conference Multiple meetups around the country Befriending, education and medical advice services useful and used UK-wide leaflet distribution campaign Converting child members to adult members challenging…...

Annual Report 2023-2024 Read details of what our officials, members and supporters did as well our finances between 1 April 2023 and 31 March 2024 in the Aniridia Network Annual Report for 2023/24. Key points Successful i…

Last call for registration for our online conference on Saturday from 2pm.
We've got 4 researchers, 2 people with aniridia and a QTVI presenting, plus our annual general meeting.
Find out more and sign up for FREE at
https://aniridia.org.uk/conference
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Members: Remember to vote in favour or against reappointing James as a trustee. You have 4 days.

Find your email from Choice Voting. Check your spam folder if you have not read it. Follow the instructions to cast your vote by end of Friday 26 July..

It is important to exercise your rights as a member so the trustees can lead our charity with your support.

The election result will be announced at the Annual General Meeting during our conference on Saturday

If you are one of our members you should have received an email enabling you to vote in our elections. Please do.

The email is from Choice Voting. Follow the instructions to cast your vote in favour or against reappointing James as a trustee.

Signed up for our online conference Saturday 27th afternoon yet?
Well be hearing from expert speakers about research results and teaching children with aniridia. And afterwards time for you to chat to each other
Find out more, register for FREE to get the link, and put it in your calendar.
https://aniridia.org.uk/conference
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Our trustees Katie and James loved talking to young people with aniridia, at the first European Anirdia Leadership Academy.
We hope we inspired them.
We also sponsored one of our members, Haya to be there as a delegate. Hear all about it from her at our online Conference on Saturday 27 July.
https://aniridia.org.uk/conference

During European Aniridia Leadership Academy (EALA) in Stockholm, Sweden, Aniridia Europe, organized 1st multiplier event for the Erasmus+ project “Together for inclusion: young people with low vision for active participation and associationism around the world”, funded by the European Union with the overall objective of preparing the young with low vision to lead the creation and management of associations in European and Latino-American societies. .eu +

Delighted that our trustee Katie was re-elected to also be a director of our umbrella group Aniridia Europe last week. They will help push forward research and support around our rare disease across borders.

Aniridia Europe Aniridia Europe gathers people all over the continent   We want to support people with aniridia in all countries and help them to share information and build useful networks in their own countries and abroad.   In Your Country What's new Donate What is Aniridia? Aniridia is a very rare disease and...

Emily Brothers Labour, 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.

Emily Brothers for Isle of Wight East in the UK Parliamentary general election Emily Brothers was a Labour Party candidate in Isle of Wight East constituency in the UK Parliamentary general election. They received 6,264 votes.Get the latest information on this candidate at Who Can I Vote For?

The Aniridia Network AGM will be held online on 13 August 2022...

Annual General Meeting 2004 The Aniridia Network AGM will be held online on 13 August 2022

Our Conference 2024 will be online in less than 4 weeks time!
Find out more, register for FREE to get the link, and put it in your calendar.
https://aniridia.org.uk/conference/
It's a great speaker line up on themes ranging, from personal experiences to cutting edge research, education and leadership programmes. Something for everyone!
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Conference 2024 The next confeerence is will be online at 2pm 27 July 2024 and FREE to attend. Register to attend We have a great line up of speakers, ready to talk about a plethora of aniridia related themes, fro…

Happy sunglasses day people with photophobia die to a visual impairment

National Sunglasses Day 2024 - The Vision Council Foundation - Learn about Vision Health, Eye Diseases and Treatments Brought to life by The Vision Council, the leading trade association for the optical industry, National Sunglasses Day is a commemorative date held annually on June 27 celebrating the importance of wearing shades to protect the eyes from the sun’s harsh ultraviolet (UV) rays.

Anastasia, who has aniridia is in a race to be the People's Champion in the Bikeability Awards.
Simply click on the photo below to read her nomination and like and/or share it to vote for her!

My People's Champion is Anastasia! 🏆

"Anastasia is severely sight impaired, can see a short arm's length but just wants to ride, and not on a tandem, because she wants to control her bike, see the view and feel free. Thanks to support from mum, and Bikeability instructors, Anastasia has achieved her Bikeability Level 1 & 2 certificate.
"Life has shown me that I must persevere, going over every obstacle and overcome my shortcoming.
I am aware of my limits therefore I focus on my potential.
SEE THE CAPABILITY NOT THE DISABILITY!"

To VOTE for Anastasia, interact with this post by reacting, liking, commenting and sharing this photo. Every interaction counts as a vote 🎉

Voting closes on Sunday 30 June at midnight. Your People's Champion will be announced on Day, Friday 12 July.

We've seen it spelt a few ways but remember 'aniridia' is about 'an i'!

Disease names not named after a person or thing should be lowercase.

As a common noun it is a valid Scrabble word, worth (pa)x6 points if a person with aniridia plays it :)

On Aniridia Day 2024 we are happy to share news from our fellow association ANA Aniridia North America, as they are launching EYEris, the Aniridia Patient Registry !
The registry will foster a better understanding of all aspects of the condition, which is critical for improving care in the future.
All info here:
https://www.aniridiana.org/eyeris-aniridia-patient-registry/

It's a very bright .
That's tough when as people with aniridia we have no irises in your eyes to block out the light!
What is your biggest challenge on days like this?
How do you deal with the glare?
Share to your timeliness to help your friends and family to understand.

See below for a summary of the presentations given at the recent European Aniridia Conference held in Sweden.

Conference videos will be available soon as well! Having attended the conference, We can assure you that the videos will be worth watching.

We are pleased to present the 7th European conference summary for patients, meticulously prepared by Prof. Neil Lagali. This conference has been exceptional and immensely valuable, and we continue to share its results ! Additionally, conference recordings will be available in the next few weeks on AE youtube channel.
You can read a summary here: https://www.aniridia.eu/2024/06/11/summary-of-the-european-aniridia-conference-available/

Could you be one of the leaders of our umbrella organisation to make progress on aniridia beyond the UK?

Be a leader of Aniridia Europe Aniridia Europe is recruiting volunteers to be directors, to lead and carry out its activities for the next 2 years. Fill in a form by the end of 7 June to apply for one of the 9 postions. It’s an …

Interesting reflections on the effectiveness of cornea transplants beyond initial years, by Newcastle UK based doctor and researcher.

Great to hear of the super work by our adviser Mariya Moosajee at Moorfields Eye Hospital & UCL Institute of Ophthalmology on non-eye conditions associated with aniridia at

We are excited to be at the in Stockholm!
Looking forward to hearing the latest medical research relating to aniridia, talking to colleagues at Aniridia Europe and supporting the new leadership academy.

Aniridia Europe is recruiting volunteers to be directors, to lead and carry out its activities for the next 2 years. Fill in a form by the end of 7 June to apply for one of the 9 postions. It’s an important and exciting role where you can influence the support provided to aniridia researchers, doctors, associations and patients, across Europe and beyond. ...

Be a leader of Aniridia Europe Aniridia Europe is recruiting volunteers to be directors, to lead and carry out its activities for the next 2 years. Fill in a form by the end of 7 June to apply for one of the 9 postions. It’s an …

Please sponsor Gemma to tackle the National Three Peaks Challenge in aid of Aniridia Network:
Climbing the 3 highest peaks of Scotland, England and Wales, within 24 hours. The total walking distance is 37km and the total ascent is 3064 metres.
Gemma is motivated by her 7 year old niece who has aniridia.

Gemma's fundraiser for Aniridia Network Help Gemma Beecher raise money to support Aniridia Network