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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

  • YOU have the Power to Make a Difference in just 15 minutes!

    YOUR data is critical in the fight to make a real difference to the lives of all those affected by Alström Syndrome (AS) YOU have the power to improve lives for the better by simply providing us with answers to some of the questions we have about infant health. ASUK have created an infant questionnaire

  • 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

  • Summer Newsletter is Out Now!!

    Here comes the ASUK Summer newsletter – full of uplifting family stories, and join us in celebrating 9 years of the Children in Need project, discover family grants available, read research updates and much , much more. You can download the pdf newsletter HERE or a plain text version HERE Don’t forget to book onto

  • Time to Talk – Organ Donation

    To coincide with Organ Donation Week from the 7th – 13th September 2020,  we would like to shine a spotlight on Organ Donation – looking at the right information to help you make the right choices for you and your family. Sifting through the myths and getting to the facts of the matter. The NHS

  • 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…Winter Newsletter, out now!

    As the weather is beginning to get crisp and cold, grab something warm and take 5 minutes to read our latest newsletter. Filled with lots of stories of what the Alstrom Community has been up to and how ASUK has been supporting families through these difficult times. Find out how you can register for the

  • Big Eid – Celebrations!

    Time to celebrate! On Friday 31st July Muslims around the world will be celebrating Eid Ul-Adha, the second of the annual Eid festivals, referred to as ‘Big Eid.’ This festival occurs directly after the month of Hajj in the Islamic Calendar. Hajj is the great Pilgrimage every Muslim must attend once in their lifetime, it

  • Hammer Down!

    Hammer Down Hassan When you are thinking of staying at home for many weeks, it can be a daunting prospect but why not check out this uplifting film. Let’s look for ways we can keep ourselves active and healthy. Share your ideas with us and we will bring together ideas and information to keep us

  • 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

  • News, Views and Useful Links (February edition)

    News, Views and Useful Links! Reaching for the Sky! One of our members Simmie who is always looking for a new challenge, shares her thoughts on her new love for trampolining, proving it is what you can do that counts. “I have recently started going to a trampoline park which opened in Birmingham not long

  • Hot off the press… Summer newsletter out now!

    As the weather is hotting up, pop your feet up, grab something chilled and take 5 minutes to read our latest newsletter.  Check out Melissa cooking up a storm in the kitchen and read how equipment is making a real difference in our families lives. You can download your pdf copy HERE or as a word

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