To mark Aniridia Day 2021, Aniridia Europe invite us and other paitent associations to make a 2 minute film about our achievements since Aniridia Day 2020. Here is the video and a transcript.
To take part in future instances, follow the Aniridia Day accounts on Instagram and YouTube and join the group on Facebook
Hi. I’m James, one of the trustees at Aniridia Network in the UK. Here’s our review of the past year.
For aniridia day 2020 we held a webinar for people around the world. The speakers included people from the UK, Ireland and Russia.
Since then we have set up 7 befriending links between new and existing members.
We have sent our Pupil Passport to 16 parents to help their children succeed at school
We contributed to the content and accessibility of the excellent Gene.Vision website created by Dr Mariya Moosajee at Moorfields Eye Hospital.
It contains in-depth, but easy to read, details about aniridia.
Alongside is scientific content aimed at clinicians and other professionals who are diagnosing patients or learning about the condition.
We are proud that a peer-reviewed paper about the development process has been published in the Journal of Medical Internet Research.
We have been very busy organising the 5th European Aniridia Conference. Lots of brilliant researchers, doctors and patients will be presenting their work and experiences. We look forward to hosting many of you online on the 31st July and the 1st August 2021.
Save the date!
Everyone in the world is welcome to come together to learn and strengthen our community.
Huge thanks go to our scientific committee and colleagues for making this all possible.
Young Aniridic Aaron has helped us in two ways. First he created a superb induction booklet for new volunteers, to make on-boarding them easier.
Second he took over our blog and instagram on Rare Disease Day 2021 to run the #RareReality campaign. He earned us lots of likes and new followers.
Another volunteer, Gavin, has designed excellent pop-up branded banners, stall tablecloth and business cards with braille.
So we are all ready to be out at events and meeting people – which we hope to be doing again soon.