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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

  • Caring About Our Carers

    We Care about Equality for Our Carers This week is Carers Week, from the 9th – 15th June 2025 The most recent Census 2021 found that there are 5.8 million unpaid carers in the UK. What is Carers Week? Carers week is the time to raise awareness and give recognition to the 5.8 million carers in

  • Take the Leap this Summer!

    Join us this summer for an incredible adventure! This Summer, ASUK is calling on our supporters to join our fundraising campaign. No challenge is too big or small.From sponsored walks and fun runs to adrenaline-pumping skydives, this is your chance to do something amazing—for yourself and for others. Together, we can raise funds and make

  • Are you receiving the right support?

    Check you’re receiving the right support There have been some payment increases for those who receive benefits from the Department of Work & Pensions (correct as of April 2025).  If you don’t currently claim these benefits and would like to talk it through with our support team, the ASUK Care Coordinators, can support you through the process:

  • Celebrate World AS Day – with a AS Research Webinar

    Celebrate World AS Day To celebrate World Alström Day we will be holding a Research Ready Webinar, where alongside Professor Tim Barrett, we will be able to tell you all about the latest research initiatives and future developments. Speaker: Professor Tim Barrett (Professor of Paediatrics and Child Health & Director for the NIHR Wellcome Clinical

  • Press Release – AS Research News!

    Press Release Alström Research Developments In October 2024, the Alström Syndrome UK (ASUK) Medical and Scientific Advisory group (MSAG) met to discuss progress in Alström Syndrome (AS) research and to explore next steps. Members of the group also stayed on to join the Alström Syndrome Family Conference and listened to our community share their thoughts,

  • Rare Disease Day – Westminster was Calling!

    Rare Disease Day takes place on the last day of February every year to raise awareness about rare diseases and their impact on patients lives. This year we launched the AS Community ‘Off the Record’ podcasts and our Chief Executive, Kerry Leeson-Beevers (pictured below on the right) headed off to Westminster! She also met up

  • 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

  • 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…

  • Groove to the Alstrom Stroove – Sneak Peek!

    This film is a must see – bringing together clinicians, families and the ASUK team to Groove to the Alstrom Stroove! Alström Syndrome UK are always looking for fun and innovative ways to stay fit and healthy. Alström can often lead to obesity and type 2 diabetes so leading a healthy lifestyle is very important

  • Easy Fundraising – whilst you shop!

    Did you know that you can support Alström Syndrome UK by shopping online? Every time you shop online via easyfundraising at one of the 3,300 retailers including John Lewis, Aviva, Sainsbury’s and Booking.com, a donation will be made to Alström Syndrome UK, and it won’t cost you a penny extra. It’s really simple to get

  • Caring About Our Carers

    We Care about Equality for Our Carers This week is Carers Week, from the 9th – 15th June 2025 The most recent Census 2021 found that there are 5.8 million unpaid carers in the UK. What is Carers Week? Carers week is the time to raise awareness and give recognition to the 5.8 million carers in

  • Hot off the press… winter newsletter out now!

    Wising you all a lovely time over the festive period. Grab something warm to drink and take 5 minutes to read these uplifting family stories, updates from the conference and how to stay well over the winter period in our latest Winter newsletter. Please download your PDF version HERE or a plain text version HERE   Please

  • 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

  • All Ears Radio – Goes Live!

    All Ears Radio – Goes Live! Where every story finds a listener… All Ears Radio has been designed for visually impaired radio lovers! ​Our very own Abdullah is not only part of the All Ears Radio team but provides a fascinating ‘Hear Me Out’ podcast series for you to listen to in your own time.

  • Dreams can come true!

    Jai’s Dream Took Flight at Birmingham Airport! Work experience gives young people the opportunity to have a short-term placement with an employer, to work alongside people as they go about their daily tasks. It supports the development of young people’s skills, introduces them to new people and they can learn more about the world of

  • 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

  • What a day and night!

    Thank you to everyone who joined the Alstrom Community on the 19th October 2019 for the Alstrom Syndrome UK Past, Present and Future conference in Birmingham.  Whilst the families and professionals gathered at the conference, the youngsters had a fun-filled day at Drayton Manor Theme Park. The conference brought families together to map their diagnostic

  • Bowled over by this donation!

    A HUGE THANK YOU to Wickersley Cricket Club! Members of Wickersley Old Village Cricket Club kindly donated £1,700 to Alström Syndrome UK following a successful summer fundraising event. 16 year old Kion, who is affected by Alström Syndrome and whose family are members of the club gratefully accepted the donation. The funding will go towards a fun-filled activity

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