Links

Aniridia

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:

International WAGR/11p deletion Syndrome Association

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.

National Wilms Tumor Study

Information about a series of studies conducted int he USA into WAGR.11p deletion syndrome.

International Glaucoma Association

A UK based charity providing help, information and support for anyone affected by glaucoma.

Nystagmus Network

A UK based charity providing help, information and support to anyone affected by nystagmus.

Childhood Cataract Network

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.

Micro and Anophthalmic Children’s Society (MACS)

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.

Royal National Institute for the Blind (RNIB)

The RNIB is the UK’s largest charity providing information, advice and support on all aspects of living with a visual impairment.  This inlcudes information on education, employment, welfare rights, technology, book in large print, audio and braille and much more.

Action For Blind People

A UK charity providing a vareity of services including information on independent living, technology, work, sports and activites for young people and emotional support.

Royal Blind Society

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.

National Blind Children’s Society (NBCS)

The National Blind Children’s Society support visually impaiored children and their families. Their services include the Starting Point website, Family Support, Educational Advocacy, information on access technologies, Direction Point (a database of resources and inforamtion), recreational activities and CustomEyes books (customised large print versions of any children’s book at no extra cost).

VICTA – Visually Impaired Children Taking Action

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 Society For Blind People

Henshaws provide expert care, advice and training to anyone affected by sight loss and their friends, family and colleagues. Henshaws are based in the north of England with centres and communities in Greater Manchester, Merseyside, Newcastle, Harrogate and Knaresborough.

Guide Dogs

Guide Dogs can provide visually impaired with a dog to help them get around and can also provide other mobility support.

LOOK

LOOK provides support for parents and carers of children with a visual imapirment. Free membership gives access to regional and national meetings including family weekends, their magazine and advice and information helpline.

Calibre Audio Library

Free audio book library service for both adults and children.

Parent Partnership Services

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.

Education Service For Hearing And Vision

Points for teachers and class room 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.

Radio

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.

Ireland

 

National Council for the Blind of Ireland (NCBI)

Fighting Blindness and Insight Counselling Service

Child Vision

National Rare Diseases Office

 

 

 

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2 Responses to Links

  1. Pingback: First meeting in Ireland | Aniridia Network UK

  2. Pingback: Launch of Aniridia Ireland North/South | Aniridia Network UK

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