Our Vision

A world where people living with Alström Syndrome receive a timely diagnosis, access to specialist care, treatment and support and feel empowered to live the life they choose.

 

Our Mission

  • To provide information and person-centred support for people living with Alström Syndrome, their families, carers and the service providers involved in their care.

 

  • To raise awareness, facilitate research and advocate for specialist services and support.

 

  • To create opportunities for peer-to-peer support and provide fun and engaging activities.

 

What we aim to do

  • To promote the health and wellbeing of people with Alström Syndrome – particularly (but not exclusively) through the provision of awareness raising, support, advice and information for people living with Alström Syndrome, their families, carers and those working with them.

 

  • To promote research into Alström Syndrome and related conditions in the UK and abroad and disseminate the results to the public.

 

How We’re Here for You

We offer a range of support, resources, and opportunities for individuals and families living with Alström Syndrome:

  • Person-centred support for individuals and their families – tailored to your needs, every step of the way.

 

 

  • Promotion of innovative research into Alström Syndrome and related conditions.

 

 

 

 

 

 

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.

Watch our short animation for a warm and helpful introduction to Alström Syndrome and the work of ASUK.

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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

  • Beat the Heat

    BEAT THE HEAT! The UK is bracing itself for another heatwave, and as these seem to be occurring more frequently, we’ve pulled together some top tips to help keep you and your loved ones safe, cool, and well. Look After Each Other A heatwave can affect anyone, but some people can be affected by the

  • 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,

  • 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

  • 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

  • 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

  • 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

  • Disabled Blue Badge Rules are Changing

    Biggest overhaul to the Blue Badge Scheme Did you know that the Blue Badge scheme is to undergo the biggest changes since the 1970s? From April 2019, the scheme will be expanded to include people with what is often described as ‘hidden disabilities’, such as mental health issues or autism. Automatic entitlement to the Blue

  • 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

  • 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

  • Game of Thrones trip of a lifetime!

    As any  Game of Thrones fan will know, Ireland is one of the backdrops for this TV fantasy drama which has gripped the world. One of our members, dreams was to visit the magical locations where the hit drama was filmed.  Through the ASUK Big Activity Grant, ASUK were able to contribute to Amy’s trip

  • 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

  • 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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