Alström Syndrome UK

Support for people with Alström Syndrome and their carers

If you are or think you might be affected by Alström syndrome, we recommend that you read this article about us first.

Alström Syndrome UK has three key aims:

  • to help people with Alström Syndrome to provide support for them, their carers and the professionals who are working with them
  • to raise awareness amongst both the public and medical professions of Alström Syndrome
  • to raise funds to promote research into Alström Syndrome

Alström Syndrome Training Course

On behalf of Alström Syndrome UK, HearFirst have designed a one day training course to help raise awareness of Alström Syndrome and to explore the different ways that individuals are effected by the condition. If you believe this could be of interest to either yourself, your colleagues or any of your employees, please download a fact sheet either here in PDF, or here in plain text.

Alström Syndrome Medical Handbook
Alström Syndrome Booklet (published July 2009)
A guide to greater understanding of this rare condition

For consultants, GPs and other health professionals as well as parents seeking to know more about Alström Syndrome.

Please download a copy here,or alternatively you can request a copy be sent to you by sending an E-mail to Kay Parkinson.

Emergency Numbers

There are two hospitals expert in Alstrom Syndrome, Torbay Hospital which treats over 16s and Birmingham Children’s Hospital which treats under 16s. If you would like to speak to a medical expert in Alstrom Syndrome please contact either:

  1. Dr Richard Paisey, Torbay Hospital: 01803 614567
  2. Prof Tim Barrett, Birmingham Children’s Hospital: 0121 333 9999

Web Mail

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Alström Syndrome UK is a registered charity, number 1071196.
Registered Company Number 3557191.

Last updated: 14th July 2010
2011 Clinic dates added here.

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