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Author Archives: Aniridia Network
Cornea Connect 2019
#CorneaConnect was a fantastic day discussing aniridia with medical researchers and patients at UCL Institute of Ophthalmology and Moorfields Eye Hospital. It aimed to bring aniridia patients together with scientists and clinicians in the Cells For Sight team, to learn about cornea research and … Continue reading
£200,000 aniridia drug research, based and funded in the UK underway
Research into the growth of eyes with aniridia has begun, funded by Aniridia Network and two families in the UK. In 2018, for the first time, Aniridia Network excitedly partnered with Fight for Sight to offer a £15,000 grant for … Continue reading
Posted in ANUK news, Medical staff talking, Research
Tagged amlexanox, ataluren, Fight For Sight, grant, Moorfields, Moosajee, PAX6, research, UCL Institute of Opthalmology
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WAGR & Pain Perception Research
The following is a transcription of a news release by IWSA (International WAGR Syndrome Association). Research In WAGR Syndrome Patients Shows Importance of BDNF Gene In Pain Perception Research published in the February 2019 issue of the journal, PAIN, has important … Continue reading
Graham’s story of life with aniridia and stem cell treatment
Graham has written a blog post about growing up in the UK with aniridia and losing sight due to glaucoma/cataracts. He also writes about the recent initial success at restoring some sight by transplanting stem cells that began in his … Continue reading
Edward’s half marathon fundraiser
Edward ran 12 miles in the Vitality Big Half Marathon to raise money for the Aniridia Network. He was inspired to do so by his cousin’s daughter Sabrina, who has aniridia. He says: “Sabrina is an amazing girl with a … Continue reading
Posted in Fundraising
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Scarlett’s sponsored walk
Rachel’s 3-year-old daughter Scarlett has aniridia. Together they did a sponsored walk at Tiverton Canal Basins in Devon on 3 March, joined by family and friends. Despite the rain, the walk was a great success, and they raised a fantastic £1198 for … Continue reading
Posted in Fundraising
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Professors’ Bremond Gignac and Rama message for Rare Disease Day 2019
To mark Rare Disease Day on 28 February 2019, two of the top specialists in Europe, made a commitment to keep researching aniridia. Thanks to the French aniridia group Geniris for making this video, that we added subtitles to. Also … Continue reading
1,000 Miles in 200 Days Fundraiser
Laura Cartmill has aniridia and autism, which presents challenges for her everyday life. But she hasn’t let her impairments get in the way of her ambition to achieve and inspire. For example, she plays football at the Torquay United club … Continue reading
Light stimulation centre wows child with aniridia
By Rob and Amelia From about 5 months old our daughter, who has sporadic aniridia, has shown an interest in LED lighting. After speaking with doctors at Moorfields Eye Hospital and more importantly, all the lovely people we met at the Aniridia Network … Continue reading
Goggles and aniridia
Swimming is a very healthy and enjoyable activity, but with reduced vision and highly sensitive eyes due to aniridia, regular goggles may be of limited use. Children, for example, may find it difficult to see their instructors in swimming lessons. … Continue reading
