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AT Society

For 25 years, this Harpenden-based charity has been a source of information, support and hope for families across the UK and beyond living with ataxia-telangiectasia (A-T). Around one in every 250 people unknowingly carries the gene for this devastating genetic condition and could have children with A-T, should their partner also carry the gene.


From early childhood A-T causes increasing physical disability and immunological problems.  Apparently ‘normal’ at birth, children become increasingly ‘wobbly’ and nearly all use a wheelchair by the age of 10. Their immune systems are affected making them vulnerable to infections and to cancer. Average life expectancy is in the mid-twenties. There are currently no effective treatments.


The A-T Society aims to ensure that people with A-T live the best lives they can. It provides direct support to families and help to access the services they need. It organises meetings, activity and respite breaks and gives grants for specialist equipment or other costs of disability. It established the world’s first specialist clinic and is now coordinating and funding international research efforts to find treatments and a cure. More information can be found at