Watch our animation here

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

  • Journey to Diagnosis Report – out now!

    Journey to Diagnosis Report Let’s set the scene, the joy of having your first born turns to despair as you know something just isn’t quite right. They have an un-controllable hunger, they are gaining weight at a rapid rate and the wobbly eyes and shying away from the light, which you thought was normal for

  • 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

  • Book NOW for the ASUK Together Again Conference

      ASUK Conference 2024: Together Again – Connecting together to share experiences, knowledge and hope for the future When: 12th October 2024 Where: 4* Mercure Birmingham West Hotel, Birmingham Road, West Bromwich B70 6RS The theme of this year’s get together is Togetherness!   ASUK are super excited to bring the AS community together again, after

  • Grant Finder

    Grants for Holidays and Day Trips Now we are approaching summer and hopefully we get some sunny weather, you may be looking for things to do.  We know how expensive summertime can be so we have put together some information below that may help. Please be aware that lots of these grant applications are only

  • 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

  • Join our Alström Chats

    Join our Alström Chats Our Care Coordinator, Clair Pudaruth is bringing parents and carers of those affected by Alström Syndrome in the UK together, to share their experiences, insights and discover ways we can support one another. In these online informal chats, parents and carers can chat together about all things Alström and support one

  • 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

  • Awareness Animation is Launched!

    ASUK is very excited to launch our Alström Syndrome ‘Living with a Rare Disease’ animation to raise awareness and understanding about this rare disease. Let’s all raise awareness and share this animation with friends, family, relevant organisations and professionals to spread the word about this ultra rare condition. Click on the image below to watch

  • 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

  • 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

  • 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

  • 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

  • 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

  • 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

  • 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

  • News, Views and Useful Links… March 2019 edition

    In this latest edition, read how one of our members literally ‘Reached for the Skies’ and how you can make your own adventure a reality… Also, what did we get up to on Rare Disease Day, great fun was had by all! Click here to view our latest e-newsletter.

  • Mental Health Awareness Week 2019

    Hosted by the Mental Health Foundation,  Mental Health Awareness Week takes place from 13-19 May 2019. The theme this year is Body Image – how we think and feel about our bodies. Body image issues can affect all of us at any age. During the week the Mental Health Foundation are publishing new research and campaigning

  • Hot off the press!! – the Winter newsletter is out NOW!

    With the cold and wintery nights setting in why not grab something warm and comforting and take 5 minutes to read our latest newsletter. This edition is full to the brim with family stories and adventures – including a Game of Thrones adventure in Ireland and one of our members relaxing in the Highlands. You

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