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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

  • 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.

  • AS Global Webinar ‘How I Manage My Diabetes’

    Bringing the AS Global Community Together How I Manage My Diabetes Come and join us to hear from Lexi, who will be speaking about how she manages her Diabetes, the devices she has found most useful and her top tips to stay healthy. Join together with the global community and share your top tips too!

  • On the hunt for a Treasurer!

    Trustee Treasurer Vacancy Alström Syndrome is an ultra-rare genetic syndrome that affects less than 1 in 500,000. Alström Syndrome UK (ASUK) is a patient led organisation that supports those living with the condition, their families and those working with them. Alström syndrome is a complex and life limiting condition, it causes multiple issues; visual loss,

  • Winter Newsletter out now!!

    Grab something hot and toasty and take 5 minutes to read our latest news… Read a the highlights from the AS Global Conference, how we kept youngsters entertained with a virtual teddy bears picnic and we introduce our newest online advocacy group, the Culture Sparkle Sisters!! Download a PDF copy HERE or a plain text

  • Join us for our AGM!

    Our next Annual General Meeting is to be a virtual event to go through the charities updates and achievements over the last year. Why not join us to see what we have been up to and you can also ask us your questions about our work and future developments. As always we would love to

  • Exciting News… New CEO!!

    Alström Syndrome UK announces new Chief Executive Officer It is with great pleasure that we announce the appointment of our new Chief Executive Officer, Kerry Leeson-Beevers. Many of you will know Kerry as a passionate advocate for those affected by Alström Syndrome, not only being Mum to Kion and Cole, but helping to develop the charity

  • Connect together for the Healthy Minds, Healthy You webinar

    Join us and connect together Healthy Minds, Healthy You Webinar   On Thursday 22nd October 2020 we will be hosting a webinar with Anne-Marie Walker and Sarah Turner, both Psychologists who are part of our Alstrom Syndrome clinical service. They will be giving an insight into how we can look after our mental wellbeing during

  • 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

  • National Conversation on Rare Diseases Survey

    Do you want to help inform the rare disease framework as part of the UK Strategy for rare diseases in 2020? If you are a patient, healthcare professional or industry member, you can take part in the ‘National Conversation’ now! The Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood,

  • 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

  • Watch LIVE – Rare Disease Event at United Nations

    A Rare Disease Day policy event will take place at the United Nations on the 21st February 2019, 14:45 pm (GMT). Over 30 speakers from around the world, including ambassadors and officials from the Permanent Missions to the UN of Brazil, Estonia, Japan, Kuwait, Thailand, and the United Arab Emirates, will discuss how to advance

  • 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

  • News, Views and Useful Links, September edition, out now!

    Welcome to your September edition, of News, Views and Useful Links. In this edition we have a full round up for you, including Amy jetting off to the Game of Thrones film sets in Ireland and discover how you can have your own adventure! and BE QUICK TO GET THIS DEAL ASUK conference is happening

  • Breaking Down Barriers Workshop September 2018

    Under the leadership of Kerry Leeson Beevers we recently joined up with other patient organisations and support groups to workshop how we can collaboratively support inclusive services for all those affected by genetic conditions. This workshop is one of the many activities we have designed to share knowledge about the inequalities experienced by families in

  • 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

  • Northern Powerhouse, Sheffield Makes People Happy!

    The Ticket Bank is for charities and community organisations that want to improve access to the arts, music events and cultural activities for their members who experience barriers to attending these events. Ticket Bank believe that all events should be accessible and socially inclusive and they provide free tickets to such events. They hope that

  • AS Global Webinar ‘How I Manage My Diabetes’

    Bringing the AS Global Community Together How I Manage My Diabetes Come and join us to hear from Lexi, who will be speaking about how she manages her Diabetes, the devices she has found most useful and her top tips to stay healthy. Join together with the global community and share your top tips too!

  • Happy Rare Disease Day 2019!

      Rare Disease Day falls on the last day of February – this year it will be on the 28th February 2019. This will be the twelfth international Rare Disease Day coordinated by EURORDIS. On this day patient organisations all over the world will hold awareness-raising activities. The theme for Rare Disease Day 2019 is ‘Bridging

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