Alström Syndrome UK

10/10/2025

Today is World Mental Health Day.

Every year on the 10th October, we take a moment to focus on what really matters — our mental health and wellbeing. It’s a reminder to look after ourselves and to check in on those around us.

At ASUK, we know that good mental health is just as important as physical health. That’s why we have our very own Wellbeing Service, led by our wonderful Wellbeing Coordinator, Melissa Crowland who’s here to offer guidance and support when you need it most.

You can also visit our Wellbeing Hub on the ASUK website — it’s full of resources, helpful information, and short videos with simple techniques to boost your wellbeing, like breathing meditations and body scans. 🌿

Let’s keep talking about mental health, supporting one another, and reminding ourselves — it’s okay to not be okay.

Alstrom Syndrome Alstrom Syndrome Canada Millie's journey with Alström Syndrome and Giant Bolster Initiative Alström ASSAI APS - Associazione Sindrome di Alström Italia Alström Angels Alstrom Syndrome International Síndrome de Alström España Alström sindrom-Hrvatska Mind Mental Health Foundation YoungMinds

It shouldn’t be underestimated the impact that a diagnosis of a rare condition can have on our physical, mental and emotional health.

30/09/2025

One of families, is hosting a charity concert on Saturday 15th November 2025 in Burnley, raising money for Guide Dogs UK
You can get your tickets by clicking on the link below:
Alstrom Syndrome

Tickets are now available for Through Ivy’s Eyes; A Concert for Hope at Kiddy Kids, Burnley on Sat 15 Nov 2025 at 6:00PM. Click the link for further information and to secure your tickets now!

29/09/2025

Exciting News!
Welcome Laylaa Islam, on the first day of her PhD researching Alström Syndrome (AS).

This is a 4-year programme where Layla will work with scientists and clinicians in Birmingham, and with ASUK and Newcastle University. The aim is to find drugs to target premature ageing (senescence) and improve health outcomes for people with AS.

Our hope is that this could lead to a clinical trial and an effective treatment.

Layla will be telling us more about her research work in the ASUK Winter newsletter.

Alstrom Syndrome Alstrom Syndrome Canada Millie's journey with Alström Syndrome and Giant Bolster Initiative Alström ASSAI APS - Associazione Sindrome di Alström Italia Alström Angels Alström sindrom-Hrvatska Alstrom Syndrome International Síndrome de Alström España

29/09/2025

I know Summer may seem like a distant memory - but the sun is still shining today!

So just in case you missed the latest Summer newsletter you can catch up with all our news and see what the community has been up to.

We even have a new flip-book for you to try on the website!

Alstrom Syndrome Alstrom Syndrome Canada Millie's journey with Alström Syndrome and Giant Bolster Initiative Alström ASSAI APS - Associazione Sindrome di Alström Italia Alstrom Syndrome International Síndrome de Alström España Alström Angels

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

25/09/2025

Did you know that this week is National Eye Health Week

Check out the Vision Matters website to find out more

Alstrom Syndrome Alstrom Syndrome Canada Millie's journey with Alström Syndrome and Giant Bolster Initiative Alström ASSAI APS - Associazione Sindrome di Alström Italia Alstrom Syndrome International
RNIB Sense Deafblind UK

Vision really matters. Sight is the sense people fear losing the most, yet many of us don't know the best way to look after our eyes. National Eye Health Week aims to change all that. Eye care charities, organisations and health professionals from across the UK have joined together across the UK in....

22/09/2025

In case you missed the AS Global Community webinar last week:
Mounjaro in Focus: Expert Insights and Personal Stories

You can now listen to the webinar recording online and download the slides.

It was a great session, giving an overview of the medication Mounjaro, the potential health benefits, side effects and safety considerations. It also has a fantastic personal insight from Melissa who gave her experiences of taking the medication.

Alstrom Syndrome Alstrom Syndrome International Alstrom Syndrome Canada Initiative Alström ASSAI APS - Associazione Sindrome di Alström Italia Síndrome de Alström España Alström sindrom-Hrvatska

Our aim is to bring the global Alström community together. Bringing individuals affected by Alström, their families, clinicians and researchers together to work in collaboration so we can learn more about this ultra-rare complex condition.

22/09/2025

Today, our Chief Executive Kerry Leeson-Beevers is presenting on behalf of the Ciliopathy Alliance at the TheRaCil Project: Advancing Therapies for Paediatric Renal Ciliopathies Annual Meeting.

Alstrom Syndrome Alstrom Syndrome International Alstrom Syndrome Canada Initiative Alström ASSAI APS - Associazione Sindrome di Alström Italia Síndrome de Alström España Alström sindrom-Hrvatska

You can find out more about their work on their website:
https://theracil.eu/

19/09/2025

Let's connect communities together and get research ready!

The AS Global Contact Form is for everyone outside of the UK to build the biggest picture of our global community and takes only a few minutes to complete.

Alstrom Syndrome Alstrom Syndrome International Initiative Alström Alstrom Syndrome Canada ASSAI APS - Associazione Sindrome di Alström Italia Alström Angels Alström sindrom-Hrvatska Síndrome de Alström España

Pop along to the Google Form to complete:
https://forms.gle/HsncGUZj21FKf1vK9

https://www.facebook.com/AlstromsyndromeUK/videos/3948103818743181

15/09/2025

There is still time to register for the webinar tonight!

Join us as we bring the AS Global community together for our next webinar.

Mounjaro in Focus – Expert Insights & Personal Stories

📅 Monday 15th September 2025, 7:00 - 8:00 pm (UK, BST)
💻 Online – open to everyone

Join Prof. Tarek Hiwot (Alström Clinical Expert, Consultant in Inherited Metabolic Disorders, Honorary Professor in the Institute of Metabolism and Systems Research, University of Birmingham) and Sadaf Ali (Specialty Registrar in Diabetes & Endocrinology, University Hospitals Birmingham, UK) as they share their expertise on the medication, Mounjaro.

✨ What we’ll cover:
✅ How Mounjaro may support weight management and overall health
✅ Possible side effects and safety considerations
✅ Real experiences from people already taking Mounjaro

Hear directly from the Alström clinical team in the UK, ask questions, and connect with families worldwide.

Alstrom Syndrome Alstrom Syndrome Canada Millie's journey with Alström Syndrome and Giant Bolster ASSAI APS - Associazione Sindrome di Alström Italia Alström Angels Alstrom Syndrome International Síndrome de Alström España
👉 Save your spot and join the conversation!
Register today: https://shorturl.at/ojWqs

12/09/2025

Plans on Monday?
You do now...
Join us as we bring the AS Global community together for our next webinar.

Mounjaro in Focus – Expert Insights & Personal Stories
📅 Monday 15th September 2025, 7:00 - 8:00 pm (UK, BST)
💻 Online – open to everyone

Join Prof. Tarek Hiwot (Alström Clinical Expert, Consultant in Inherited Metabolic Disorders, Honorary Professor in the Institute of Metabolism and Systems Research, University of Birmingham) and Sadaf Ali (Specialty Registrar in Diabetes & Endocrinology, University Hospitals Birmingham, UK) as they share their expertise on the medication, Mounjaro.

✨ What we’ll cover:
✅ How Mounjaro may support weight management and overall health
✅ Possible side effects and safety considerations
✅ Real experiences from people already taking Mounjaro

Hear directly from the Alström clinical team in the UK, ask questions, and connect with families worldwide.

Alstrom Syndrome Alstrom Syndrome Canada ASSAI APS - Associazione Sindrome di Alström Italia Alstrom Syndrome International Initiative Alström Macy's world Alström sindrom-Hrvatska Alström Angels Millie's journey with Alström Syndrome and Giant Bolster Síndrome de Alström España

👉 Save your spot and join the conversation!
Register today: https://shorturl.at/ojWqs

05/09/2025

🌍 Bringing the AS Global Community Together 🌍

We’re excited to invite you to our next global webinar:
Mounjaro in Focus – Expert Insights & Personal Stories

📅 Monday 15th September 2025, 7:00 - 8:00 pm (UK, BST)
💻 Online – open to everyone

Join Prof. Tarek Hiwot (Alström Clinical Expert, Consultant in Inherited Metabolic Disorders, Honorary Professor in the Institute of Metabolism and Systems Research, University of Birmingham) and Sadaf Ali (Specialty Registrar in Diabetes & Endocrinology, University Hospitals Birmingham, UK) as they share their expertise on the medication, Mounjaro.

✨ What we’ll cover:
✅ How Mounjaro may support weight management and overall health
✅ Possible side effects and safety considerations
✅ Real experiences from people already taking Mounjaro

Hear directly from the Alström clinical team in the UK, ask questions, and connect with families worldwide.

Everyone is welcome.

Alstrom Syndrome Alstrom Syndrome Canada Initiative Alström ASSAI APS - Associazione Sindrome di Alström Italia Millie's journey with Alström Syndrome and Giant Bolster Alstrom Syndrome International Alström Angels Síndrome de Alström España Alström sindrom-Hrvatska



👉 Save your spot and join the conversation!
Register today: https://shorturl.at/ojWqs

02/09/2025

This Sunday on the 7th September 2025, the UK Government will be testing the Emergency Alert System. Your phone is likely to make a loud noise even if it's on silent.

Click on the link below which will take you to the Governments website to find out everything you need to know about what's happening and why:
Alstrom Syndrome Millie's journey with Alström Syndrome and Giant Bolster Macy's world New College Worcester New College Worcester Network

The government will be testing the Emergency Alerts system this Sunday, and your phone is likely to make a loud noise even if it's on silent. Here's everything you need to know about what's happening and why.