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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

  • 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

  • A huge THANK YOU to Children in Need!

    A huge THANK YOU to Children in Need! ASUK are committed to improving services for our young people and their families. In 2015, we were lucky enough to receive 3 years funding from Children in Need to provide support to young people to support them through transition from clinics at Birmingham Children’s Hospital to 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

  • 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!

  • Rare Disease Centres get the green light!

    LifeArc launches £40m research centres to hopefully unlock new tests and treatments for people living with rare diseases The aim of the 4 new LifeArc Translational Centres for Rare Diseases, is that people living with rare conditions will get access to improved tests and treatments. Bringing together leading rare disease scientists and specialists, these virtual

  • National Genomics Board

    A new Genomic Medicine Service is in the process of being established to provide a more consistent and equitable genetic testing service to people living throughout England. Its Board brings together senior decision makers across the sector, including key civil servants, delivery partners, patient advocates and representatives from research organisations and industry. The purpose of the Board

  • 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!

  • 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

  • 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

  • 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

  • Around the World with Alstrom #AlstromGlobal

    Jetting off to the Alstrom Syndrome International Conference in the USA! ASUK Trustee, Alex Griffiths-Rayson and Chief Executive, Ann Chivers set-off on the 30th April 2019 to attend the Alstrom Syndrome International conference in Texas, USA. The event was spread over 5 days from the 2nd – 6th May 2019 and included family and professional

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