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.
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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.
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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 →
ASUK News
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
Have your voice heard on Rare Disease Day
Rare Disease Day – All About Equity Rare Disease Day falls on the last day of February each year – 28th February 2026 (or on a leap year the rarest
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
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
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
Be a Rare Champion!
Can you remember when we gathered together on our bikes to ride from Torquay to Birmingham, an amazing 200 miles to raise money and awareness of Alstrom Syndrome or when
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
All Ears Radio – Goes Live!
All Ears Radio – Goes Live! Where every story finds a listener… All Ears Radio has been designed for visually impaired radio lovers! Our very own Abdullah is not only
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
Planning for the Future
This is often a topic, which we choose to leave for another day, but planning for the future is important. The charity, Contact for families with disabled children have
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 moreWorld 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
Wow! – Listen to Inspirational Kion on BBC Radio 2
Listen to inspirational Kion (pictured below) who featured on BBC Radio 2’s Chris Evans morning show, on Monday 13th November 2017. Follow the link below to the recording, if you move theAll Ears Radio – Goes Live!
All Ears Radio – Goes Live! Where every story finds a listener… All Ears Radio has been designed for visually impaired radio lovers! Our very own Abdullah is not only
