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.

National 3 Peaks Challenge raises £735

Gemma raised mountains of money for us by speedily climbing the three highest peaks of Scotland, England and Wales, in 24 hours. Here’s her story. I decided to take on this challenge in order to motivate myself to stay fit … Continue reading

Rate This

Posted in Fundraising | Tagged , , , | Leave a comment

Meet up in Kensington after Sight Village 2024

Twelve people joined us for dinner and chat about aniridia on 5 November. This included an American woman who has recently move to London for work and another long-lost member as well as several regulars. It was immediately after the … Continue reading

Rate This

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

Four steps forward, two steps back …?

Permjit Bhachu is Information, Advice & Guidance Coordinator at the charity Focus Birmingham. At our 2023 conference in Birmingham last September, she gave a talk about one particular person she had been working with, who had endured a great deal of hardship … Continue reading

Rate This

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

Living with Auditory Processing Disorder

Alyson Mountjoy is the founder of APD Support UK, which provides information and useful links for people affected by Auditory Processing Disorder, a condition that affects her son. She has also written two books on APD – one of which … Continue reading

Rate This

Posted in Patients' tales | Tagged , , | 1 Comment

Annual General Meeting 2024

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

Rate This

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

Conference 2024

We held this great event online and it was completely FREE to attend. We had a great line up of speakers, to talk about aniridia related themes. From personal experiences to cutting edge research, education and leadership – something for … Continue reading

Rate This

Posted in Aniridia Network news, Education professionals sharing, Medical staff talking, Patients' tales, Research | Tagged , , , , , | 1 Comment

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 Thanks to the the amazing input by everyone who … Continue reading

Rate This

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

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’ … Continue reading

Rate This

Posted in Aniridia Network news, Medical staff talking | Tagged | 2 Comments

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. It’s an important and exciting role where you can influence the support provided to aniridia researchers, doctors, associations and patients, across … Continue reading

Rate This

Posted in International | Tagged | Leave a comment

Meet up to mark Rare Disease Day

18 members came to one of 4 meet ups around England to celebrate international Rare Disease Day 2024. They got to meet fellow aniridia patients and relatives to chat about all aspect of aniridia. As always it was a wonderful … Continue reading

Rate This

Posted in Aniridia Network news | Tagged , , | 2 Comments