Individuals who are diagnosed with Alström Syndrome and their families are at the heart of everything we do.

Alstrӧm Syndrome UK is a patient-led organisation dedicated to providing high quality personalised support and services which include access to Alström Syndrome specialist clinics.

Find the support that’s right for you and your family.

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

Personalised support for individuals and families – tailored to your needs, every step of the way.

Get support →

A caring and inclusive community where you can feel supported, involved, and heard.

Join our community →

Specialist medical screening clinics, providing expert guidance and the latest information to help manage the condition.

Learn more about the specialist clinics →

The Alström Syndrome Medical Handbook – your trusted guide to up-to-date information.

Download the handbook →

Support for children and young people as they grow up, through the T-KASH resources.

Learn more about T-KASH →

Activities and projects for all ages, helping you stay connected and involved.

Get involved with upcoming events →

Innovative research into Alström Syndrome and related conditions, helping to improve understanding and care.

Learn about our research →

AS Global works in collaboration with families, clinicians and researchers around the world.

See what’s happening globally →

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

ASUK News

  • ASUK Achieves PIF TICK Quality Mark

    Alström Syndrome UK Achieves PIF TICK Quality Mark for Trusted Health Information We are delighted to announce that Alström Syndrome UK has achieved the PIF TICK trust mark, the UK-wide

  • Hot off the press… Spring newsletter out now!

    Whilst the weather begins to warm up once again, grab something cold and refreshing to drink and sit down for 5 minutes to read the latest ASUK Community Newsletter. In

  • World AS Day – 3rd May 2026!

    Join Together on World Alström Day – 3rd May 2026 Carl Henry Alström was a Swedish psychiatrist who first identified and described Alström Syndrome in 1959. His work brought attention

  • Jetting off – don’t forget to get covered!

    Travel Insurance for pre-existing medical conditions  We know at this time of year many of you will be longing for warmer climates and starting to book those holidays! It can

  • Festive News from ASUK

    Festive Wishes At this time of year, many of us pause to reflect. For some, it is a joyful season filled with celebration, connection and warmth; for others, it can

  • Our Everyday Heroes!

    Meet some of our incredible fundraisers – our everyday heroes! Throughout 2025, ASUK has been supported by some incredible fundraisers – doing amazing challenges to support our cause. In February

  • Courage Award for Courageous Jai!

    On the 10th March 2020 the annual Children of Courage Awards ceremony took place. The awards are given to children and young people who display outstanding courage and tenacity to

  • 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

  • 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

  • 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

  • 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

  • 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

  • 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

  • Winter newsletter is out now!

    Pop your feet up for five minutes and read about the latest ASUK news… Including how to get involved next year in ASUK turning 25 and plenty of useful resources

  • 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

  • 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

  • Hot off the press… 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, updates from the conference and

  • Travelling Blind; Where will your adventure take you?

      On 7th March 2019 BBC Two aired a travelling show with a difference, Travelling Blind. This featured Amar Latif, founder of Travel Eyes and comedian Sara Pascoe as they
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