Gwasanaeth Gwybodaeth I Deuluoedd - Family Information Service

Alstrom Syndrome UK - Family support services

What we do

Alström Syndrome UK provides support for those affected by Alström Syndrome, their carers and professionals working with them. Alström Syndrome is an ultra rare recessively inherited genetic disorder, which means that both parents will carry the gene although probably be unaffected themselves.

Alström Syndrome UK provide help with gaining access to medical assessments with doctors who have gained expertise in understanding the many manifestations of Alström Syndrome, help and advice with educational, social and benefit problems, and support to families from families who live with Alström Syndrome.

Who do we support

Whether you are worried that you or someone you care for is affected by Alström Syndrome, or you need help, practical advice or emotional support, then please contact by email or phone.

Is there a charge to use this service?


Can anyone use this service?

Anyone can contact us directly

Service details for this family support services

Language: English only

  • Able to support children with disabilities Yes
  • Are staff DBS checked? Yes


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