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

  • 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

  • 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.

  • EURORDIS: access to medicines for all

    EURORDIS has published their position on early access to medicines in Europe; arguing for compassionate use to become a reality so patients in urgent need get the help and treatments needed. Currently many medicines take far too long to develop which for many rare and complex conditions these medical interventions are needed now. A compassionate

  • 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

  • Breaking down Barriers website launched

    Breaking down Barriers, website has launched! Developing supportive and inclusive services for individuals and families affected by genetic conditions. Have a look at the new website to find out more about this project and the fantastic work being achieved. http://breaking-down-barriers.org.uk/

  • 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

  • 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

  • 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

  • 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 in our latest Winter newsletter. Please download your PDF version HERE   Please get in touch with Catherine Lewis if you would like an article to be included in our

  • 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

  • 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

  • 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

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