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

Third Sector Excellence Awards WinnerAlström Support Group: a Winner in the Third Sector Excellence Awards

From the Autumn 2007 edition of the ‘Third Sector’:-
“The Compact can help the smallest of charities in their battles with large state bodies. Kay Parkinson set up Alström Syndrome UK a decade ago after her two children were diagnosed with the condition, which leads to childhood blindness and obesity because of insulin-resistant diabetes. It is extremely rare: fewer than 400 people worldwide are diagnosed with it.”

Read more in the News section of the website.

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: 24th March 2009
2008 Conference report added.

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