Author Archives: Aniridia Network

Unknown's avatar

About Aniridia Network

A charity support group for people with the genetic visual impairment aniridia and their families in the UK and Ireland. Our vision is that people with/associated with aniridia are hopeful, confident, supported and well informed regarding aniridia. Founded in 2000. First registered as a charity in 2011 and fully in 2018.

Sunglasses and eyeshields

Alternatives to traditional sunglasses that could be well suited to people with aniridia are available from RNIB. The HiView range of eyeshields and the green coloured HiView Plus in particular are designed to cut down glare while increasing contrast. They offer … Continue reading

Rate This

Posted in Other agencies | Tagged , , | 2 Comments

TV programme looking for people with aniridia

Optomen Television, the BAFTA award-winning producers of Mary Portas: Queen of Shops, Kevin McCloud’s Man Made Home and Heston Blumenthal’s Feast is producing a brand new TV medical series for the Discovery Network and needs your help.   The programme … Continue reading

Rate This

Posted in Other agencies | Tagged , | Leave a comment

Youth With Aniridia In Europe summer camp 2015

A summer camp in north east Italy for young people with aniridia across Europe is being organised. You can be involved with this exciting event The camp will be in summer 2015 in a national park in the Venetia region … Continue reading

Rate This

Posted in Aniridia Network news, Other agencies | Tagged | Leave a comment

System to measure treatment of Limbal stem cell deficency)

Scientists have established a system to measure the effectiveness of treatment for cornea disease in people with aniridia – caused by Limbal stem cell deficiency  (LSCD) This objective, standardised method allows the effect of a treatment on patients to be … Continue reading

Rate This

Posted in Research | Tagged , | 1 Comment

Protected: Day in the life of an aniridia research scientist

There is no excerpt because this is a protected post.

Rate This

Posted in Medical staff talking, Research | Tagged , | Enter your password to view comments.

Aniridic Family group on Facebook

To get answers to questions on aniridia and meet people affected by it, a great resource is the Aniridic Family group on Facebook. It has over 500 members from all over the world and is still growing. Anyone can start … Continue reading

Rate This

Posted in Parents' accounts, Patients' tales | Tagged | Leave a comment

Ben gets job with Dolphin

Ben who has aniridia has got a job with Dolphin Computer Access a company providing assistive technology including the popular SuperNova screen reading software. He will be a Technical Support Apprentice. Ben says “This is a whole new challenge. I’ll be … Continue reading

Rate This

Posted in Patients' tales | Tagged , | Leave a comment

Walk through London at night raises £742 for aniridia research

I’m a reasonably happy walker. Five miles or so can be very pleasant on a nice day. Also, I know people who’ve done the Moonwalk for breast cancer, who I didn’t think were necessarily much fitter than I was, at least with the … Continue reading

Rate This

Posted in Aniridia Network news, Fundraising, Research | Tagged , | 1 Comment

£500 donation from 200 mile bike ride

A huge thank you to parents Caryl and Tristan for a £500 donation resulting from taking part in a 200 mile charity bike ride from Caernarfon to Cork. It will make it possible for us to print leaflets for hospitals … Continue reading

Rate This

Posted in Aniridia Network news, Fundraising | Tagged | Leave a comment

Review of 2013 Make a Miracle Conference and Social

By Veronica van Heyningen The 2013 meeting of Aniridia Foundation International (AFI) was held in Charlottesville Virginia, USA, at the beginning of August.  Many of you may be beginning to take for granted the format of these meetings with patients and … Continue reading

Rate This

Posted in Medical staff talking, Research | Tagged , , , , | Leave a comment