For details of aniridia support groups in other countries and the international organisations, read our aniridia around the world page.
Conditions associated with aniridia
These are links to organisations related to some of the conditions that can be associated with aniridia:
A support group for everyone affected by WAGR/11p deletion syndrome. The group is open to anyone around the world including those from the UK.
Information about a series of studies conducted int he USA into WAGR.11p deletion syndrome.
A UK based charity providing help, information and support for anyone affected by glaucoma.
A UK based charity providing help, information and support to anyone affected by nystagmus.
A UK based charity providing help, information and support to families of children with cataracts and to anyone who had a cataract as a child.
Occasionally some children with aniridia are also born with microphthalmia (small eyes). Sometimes cases of coloboma can be confused with partial aniridia. MACS offer information about both of these conditions as well as help and support.
General visual impairment
There are many sources of help and advice available to people with a visual impairment and their families. We cannot list all them here but we have included those we feel would be most beneficial to people affected by aniridia in the UK.
The RNIB is the UK’s largest charity providing information, advice and support on all aspects of living with a visual impairment. This includes information on education, employment, welfare rights, technology, book in large print, audio and braille and much more.
A UK charity providing a variety of services including information on independent living, technology, work, sports and activities for young people and emotional support.
The Royal Blind Society provide help grants to blind and partially sighted people in the UK who are on a low income. The grants can be for many purposes but all have the aim of improving the lives of the recipients. They also provide a range of holiday and leisure opportunities for the visually impaired.
VICTA provides support and information to parents/carers/VI young people/organisations in the UK. They make grants to individuals, groups and research projects.
Henshaws provide expert care, advice and training to anyone affected by sight loss and their friends, family and colleagues. Henshaws is based in the north of England with centres and communities in Greater Manchester, Merseyside, Newcastle, Harrogate and Knaresborough.
Guide Dogs can provide visually impaired with a dog to help them get around and can also provide other mobility support for adults, children.
LOOK provides support for parents and carers of children with a visual impairment. Free membership gives access to regional and national meetings including family weekends, their magazine and advice and information helpline.
Free audiobook library service for both adults and children.
Information, advice and support regarding special educational needs. They have a role in making sure that parents’ views are heard and that these inform local policy and practice. Wherever they are based, they are at ‘arm’s length’ from the local authority. Their services are confidential and impartial.
Points for teachers and classroom assistants and parents of visually impaired children to consider about school.
Local societies for the blind and visually impaired
There are many local organisations helping blind and visually impaired people. There are too many for us to list here but we recommend searching for a one in your area.
The Radio 4 program In Touch has news, views and information for people who are blind or partially.
The RNIB also runs a radio station called RNIB Connect Radio.