About us

Aniridia Network is a support group and charity for people affected by aniridia: those who have it plus their family, carers, doctors, educators and other support givers.

We want all these people to be hopeful, confident, supported and well informed regarding aniridia.

Since formation in 2000 our entirely unpaid team of trustees and volunteers has consisted mainly of people with aniridia and their relatives. Our funding comes entirely from donations.

In 2018 we became a registered charity. Read the Aniridia Network constitution that governs how we operate.

Our Patron is Veronica van Heyningen, CBE, a highly distinguished geneticist who has done extensive research into the genes that cause aniridia. We have affiliations with organisations relevant to our rare genetic condition.

For information please contact us.

Our Vision

Our vision is that people with/associated with aniridia are hopeful, confident, supported and well informed regarding aniridia. We do this by:

• creating a positive, supportive network of families, individuals and professionals in order to share ideas, experiences and give emotional support
• providing information, particularly to health professionals, patients and their families, about aniridia, the related conditions and their implications for the patient
• providing information on education and the welfare system and life skills relevant to aniridia and related conditions
• promoting research into the causes, effects, treatment and management of aniridia and related conditions and publicising the results.

Our Values

We aim to be:

• Informative
• Specialised
• Approachable
• Inclusive
• Positive
• Supportive

Our Beliefs

1. Every person with/associated with aniridia:
   • has their own story to tell and something unique to contribute
   • can benefit from shared experiences.
2. People with aniridia can have a fulfilling life and contribute to society.
3. People should have accurate and up-to-date information about all aspects of aniridia
4. Everyone with aniridia should receive the best quality: medical, education and welfare services appropriate to their individual needs.
5. Medical research and treatments can benefit people with aniridia.

Here’s a video from our Conference 2013 where trustee James introduces the aims and activities of Aniridia Network