Resources
This is a collection of links to other resources on the internet. Please let us know if you have any suggestions.
- Medical links
- Resources for parents and carers
- Resources for blind and partially sighted people
- Resources for the hard of hearing
Medical links
Links to websites with information about Alström-related conditions. Most of these are not specifically for medical professionals.
Information about Cardiomyopathy
Please note that people with Alström Syndrome are much more likely than average to recover from this condition.
Wikipedia entry – Nystagmus
Nystagmus (wobbling eyes) is common in people with Alström Syndrome.
Genetic Alliance
Genetic Alliance UK is the national charity of patient organisations supporting all those affected by genetic disorders.
Rare Disease UK
The National Alliance for people with rare diseases & all who support them.
Resources for parents and carers
Help with special needs educations, disability allowances, etc
New College Worcester
New College Worcester is a co-educational residential special college for blind and partially sighted pupils aged 11 – 19 who are able to access the full range of the National Curriculum and progress to study post 16.
Scottish Sensory Centre
For everyone who is involved in the education of deaf children, deafblind children and visually impaired children and young people, the young people themselves and their families.
Contact a Family
Contact a Family provides support, advice and information for families with disabled children, no matter what their condition or disability.
Sense
Sense provide expert advice and information as well as specialist services to deafblind people, their families, carers and the professionals who work with them. We also support people who have sensory impairments with additional disabilities
Resources for blind and partially sighted people
Visual impairment is typical in people with Alström syndrome.
Action for Blind People
Action for Blind People is an expert national charity that provides practical support to blind and partially sighted people through work, housing, leisure, benefits and support. Actionnaires Clubs provide sports activities for children. Action have some excellent hotels for blind and partially sighted people.
Deafblind UK
Deafblind UK offers comprehensive services to deafblind people, their support assistants and other professionals. These include training in communication and rehabilitation skills; a free 24 hour helpline; a regional network of staff and volunteers; a varied leisure programme and a range of publications in different reading formats.
National Blind Childrens Society
Large print book service, activities, holidays and support.
RNIB
The UK’s leading charity offering information, support and advice to over two million people with sight problems.
The Guide Dogs for the Blind Association
Supply guide dogs for the visually impaired.
Resources for the hard of hearing
Alström Syndrome can cause hearing loss, and occasionally deafness.
Hearing dogs for the Deaf
Train dogs to alert deaf people to specific sounds, whether in the home, workplace or public buildings.
RNID
RNID supports deaf and hard of hearing people at home and at work, providing help, advice, equipment and even supported housing.
