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Alström Syndrome UK offer:

  • Support for families and individuals affected
  • Caring and Supportive Community
  • Promotion of Innovative Research
  • Medical Screening Clinics where patients can receive the most up to date information to manage their condition
  • Alström Syndrome Medical Handbook
  • Family and Professional Conference
  • Opportunities to have Fun and be part of our exciting projects!

It is important to remember, AS symptoms may develop at different stages and not everyone is affected by all of the symptoms. Even amongst siblings the symptoms can vary.

Alström Syndrome UK has three key aims:

  • To support people who are affected by Alström Syndrome including 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
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Emergency Numbers

The Queen Elizabeth Hospital, Birmingham and Birmingham Children’s Hospital offers AS multi-disciplinary clinics and AS specialists. In an emergency your first point of contact should always be to call 999. If you need to speak to a medical expert in Alström Syndrome please contact ASUK and we will put you in touch with the correct specialist. If you would like to speak to the AS Clinical Lead please contact either:

  • Dr Tarek Hiwot (adult services), Queen Elizabeth Hospital, Birmingham: 07979 127826 or alternatively via the QEH switchboard: 0121 627 2000
  • Prof Tim Barrett (children’s services), Birmingham Children’s Hospital: 0121 333 9999

Breaking Down Barriers


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ASUK News

  • Join us for the AGM

    Invitation to the ASUK Annual General Meeting       You are invited! Alström Syndrome UK are pleased to announce our Annual General Meeting will take place virtually on Wednesday 22nd November 2023 from 7-8pm (GMT, UK time). The Board of Trustees and Chief Executive will all be in attendance. At the AGM we will celebrate

  • Invitation to Inaugural Lecture: Alstrom Past, Present and Future

    In celebration of Alström Syndrome UK turning 25, AS Global is pleased to announce the world’s first annual lecture all about Alström Syndrome. Alström Syndrome Past, Present and Future. You are invited to this, the first inaugural Lecture all about Alström Syndrome. This free virtual lecture will investigate the history of Alström Syndrome, what progress

  • Rare Disease Day 2023!

    Happy Rare Disease Day! This day falls on the last day of February and aims to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers. Watch this years film below, highlighting the inequality faced by so many: Light up for Rare Disease Day! Light

  • People Power!

    A Truly Accessible World for Everyone – People Power! Imagine for a moment – that you walk into your usual supermarket and every item has blank labels on them, and you can’t tell what anything in the boxes, tins and packaging is! Well, welcome to the world for those who are affected by visual impairment…

  • Winter newsletter is out now!

    Pop your feet up for five minutes and read about the latest ASUK news… Including how to get involved next year in ASUK turning 25 and plenty of useful resources and top tips to help families throughout the cost of living crisis. You can download your copy HERE you can also read a plain text document HERE

  • ASUK Turns 25!

    ASUK will be having a silver anniversary year. ASUK will be 25 years old next year!! – it is going to be a year of get togethers and celebrations starting with a family gathering in the UK in April. Join in! We are launching the ‘Rare Moments’ Art Exhibition You are all invited to grab

  • My Guide Dog and Me…

    Have you ever wondered what having a guide dog is really like, how are you assessed and what training is involved? Meet Kion and Curtis, they have both passed their guide dog assessment and are now on the waiting list to have their first guide dog… Following their assessment, they were both invited to Shireview Guide

  • Hot off the Press! – Summer Newsletter Out NOW!

      As the weather is hotting up, grab something chilled and take 5 minutes to read our latest newsletter. Filled with lots of stories from our members including travels to Barbados and America and how Birmingham Bobbies made dreams come true… Find out how you can get involved in planning your Family Event on the

  • Rare Disease Day 2020

    On the last day of February every year the rare disease community comes together to raise awareness of rare diseases and their impact. This year is particularly special as Rare Disease Day falls on a leap year so it is even more rare falling on the 29th February 2020. The key message this year is that:

  • ASUK Annual Review Summary

    The ASUK Annual Review Summary is now published! This summary captures our activities from the last financial year. We hope you agree that this gives a snapshot of how we have provided support as well as the daily achievements of many families and people living with Alström. Click below for access: ASUK Annual Review 2017-2018

  • Rare Disease Day 2023!

    Happy Rare Disease Day! This day falls on the last day of February and aims to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers. Watch this years film below, highlighting the inequality faced by so many: Light up for Rare Disease Day! Light

  • News, Views and Useful Links… May 2019 edition OUT NOW!

    Welcome to your May edition, of News, Views and Useful Links.   In this May edition we have a full round up for you, including Ann and Alex jetting off to the Alstrom Syndrome International conference in the USA! and HOT OFF THE PRESS ASUK are hosting a family event later this year, full of

  • Active Lifestyle Winner!

    Active Bradford is a partnership of organisations committed to making Bradford a healthier and more prosperous place to live and work. Each year Active Bradford host an awards ceremony where they recognise those people and organisations who go above and beyond in their local area to help other people get active or through their own

  • Disabled Blue Badge Rules are Changing

    Biggest overhaul to the Blue Badge Scheme Did you know that the Blue Badge scheme is to undergo the biggest changes since the 1970s? From April 2019, the scheme will be expanded to include people with what is often described as ‘hidden disabilities’, such as mental health issues or autism. Automatic entitlement to the Blue

  • We’ve joined the Rare Revolution!

    We are proud to announce that we are now a Charity Partner and an integral part of the Rare Revolution magazine, helping to bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community.  We hope this will raise awareness of Alstrom Syndrome alongside other rare conditions and will

  • ASSAI Family Day Padua – 13th October 2018

    ASUK were kindly invited by Pietro Maffei, the president of ASSAI (Association of Alström Italy) to their family day on 13th October 2018. This was a wonderful event that we feel very grateful to have been part of. It was an excellent opportunity to share some of the knowledge we have developed in the UK

  • World Alström Syndrome Day is HERE!!

    3rd May 2022 Today is the first World Alström Syndrome Day!! Celebrating Carl Henry Alström who was born on the 3rd May & discovered the Syndrome. Let’s learn more about this ultra-rare condition… Make a difference today & complete the Global AS Patient Registry so we can find further treatments and manage this complex condition effectively.

  • What does the new lock-down mean for you?

    New Year, brings another new lockdown! As I am sure you are all aware, the Government has introduced new national restrictions which means that from 5th January 2021, we must all stay at home and avoid meeting people we do not live with, except for specific purposes. I am sure once again you all have your own worries, concerns and questions about what this

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