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
There are two hospitals expert in Alström Syndrome, Queen Elizabeth Hospital, Birmingham which treats over 16s and Birmingham Children’s Hospital which treats under 16s. If you would like to speak to a medical expert in Alström Syndrome please contact either:
- Dr Tarek Hiwot, Queen Elizabeth Hospital, Birmingham: 07979 127826 or alternatively via the QEH switchboard: 0121 627 2000
- Prof Tim Barrett, Birmingham Children’s Hospital: 0121 333 9999
Meet even rarer - twin girls Katie and Hannah who have been diagnosed with Alström Syndrome
Meet and interact with others who share your condition in a supportive and friendly environment. Find the information and support you need and share your own experiences.
Click on the RareConnect logo to join the Alström Syndrome Community – Connecting Rare Disease Patients Globally.
Sign up today and get involved!
Join ASUK for fun filled activities!
See the stories page for more information…
Raise funds for ASUK
Patients, Doctors and family members cycled 200 miles in aid of ASUK, have a look on the fundraising pages to find out how you can get involved and raise funds for this great cause. With Your Help, We Have Hope
Living with Alstrom Syndrome DVD
You can view the film via our You Tube video here
kindly funded by Jeans for Genes Day and Genetic Disorders UK
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 affected 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 Booklet (published 2010, updated October 2012)
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.