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.
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A caring and inclusive community where you can feel supported, involved, and heard.
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Innovative research into Alström Syndrome and related conditions, helping to improve understanding and care.
Learn about our research → -
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→ -
European Clinical Guidelines for professionals to support best practice in care and treatment.
View the clinical guidelines → -
Family and professional conferences that bring people together to learn, share, and connect.
See our previous events → -
Activities and projects for all ages, helping you stay connected and involved.
Get involved with upcoming events → -
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
Fundraising for ASUK!
A HUGE thank you to David Lunt who will be taking part in the London Marathon on 22nd April to help raise funds for a number of charities one of
Hot off the press!! – the Winter newsletter is out NOW!
With the cold and wintery nights setting in why not grab something warm and comforting and take 5 minutes to read our latest newsletter. This edition is full to the
Hammer Down!
Hammer Down Hassan When you are thinking of staying at home for many weeks, it can be a daunting prospect but why not check out this uplifting film. Let’s look
Don’t send me a card!
Supporting ASUK at Christmas. With the cost of postage going through the roof and us all looking for ways to help and support one another over the festive period… Why
News, Views and Useful Links (February edition)
News, Views and Useful Links! Reaching for the Sky! One of our members Simmie who is always looking for a new challenge, shares her thoughts on her new love for
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
Ramadan at home
WHAT IS RAMADAN? In 2020, Ramadan will be from around the 23rd/24th April for 29/30 days. It is the holiest month of the year for Muslims as it is when
Christmas Cracker!
We have a special treat for you… At the recent ASUK Conference, Aisha from the AS Culture Family Forum got us all in the Christmas spirit by singing Mariah Carey’s
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,
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
GAAD – Go Mouseless!!
16th May 2019 Today marks the eighth Global Accessibility Awareness Day #GAAD. The day aims to get everyone talking, thinking and learning about how to make digital technology accessible and
What are European Reference Networks?
European Reference Networks are a virtual network of specialists and healthcare providers across Europe who aim to share knowledge and information they hold about rare complex conditions. The hope is
