Alstrom syndrome

Definition: Alstrom Syndrome is an ultra rare recessively inherited genetic disorder, which means that both parents will carry the gene although probably be unaffected themselves. ASUK know of around 80 families in the UK who are affected, this figure could be higher due to delayed diagnosis and the rarity of the condition, many may still be undiagnosed. The condition is characterised by retinal degeration, hearing loss, obesity & insulin resistance.

Category: Eye Condition

Credit: Alstrom Syndrom


Services specifically catering for people with Alstrom syndrome

Alstrom syndrome support group - (Alstrom Syndrome UK)Service

Provides support for those affected by Alström Syndrome, their carers and professionals working with them. This includes a forum, help with gaining access to medical assessments with doctors who have expertise in Alström Syndrome, quarterly medical screening clinics and a newsletter.
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Benefits advice - (Alstrom Syndrome UK)Service

The organisation offers help and advice with educational, social and benefit problems to people affected by Alstrom syndrome.
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