Alström Syndrome UK

27/03/2026

📢 Now Live: AS Global Webinar Recording & Factsheet

Compassion without Burn out: Supporting Yourself While Supporting Others.

Our latest AS Global webinar is now available to watch, along with a supporting factsheet.

This session brings together practical insights and strategies to help you better understand compassion fatigue and the importance of self-care.

💡 The session covers:
• What is compassion fatigue?
• What is burn out?
• Coping tips & strategies
• What is self-care and how can we use it to combat compassion fatigue and burnout?
• What is sensory overload?
• Signs of, and ways to manage sensory overload
• Breathing techniques

Take some time to explore the recording and resources—because supporting yourself is just as important as supporting others.

Alstrom Syndrome International Alstrom Syndrome Canada Asociacia Alströmovho syndromu -Slovensko Alström Syndrom e.V. Alström sindrom-Hrvatska Síndrome de Alström España ASSAI APS - Associazione Sindrome di Alström Italia Millie's journey with Alström Syndrome and Giant Bolster Macy's world

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

26/03/2026

Why are Rare Disease and Specialised Services so valuable?
Listen to opinions and views from multi-disciplinary experts at the Alexion Pharmaceuticals Rare Network Innovation Exchange, including our own Trustee, AS Clinician and Researcher Professor Timothy Barrett, and Kerry Leeson-Beevers Chief Executive of Alström Syndrome UK.
🎥 Watch here: https://ow.ly/wcbG50Y6o5I
Alstrom Syndrome International Initiative Alström ASSAI APS - Associazione Sindrome di Alström Italia Síndrome de Alström España Asociacia Alströmovho syndromu -Slovensko Genetic Alliance UK University Hospitals Birmingham NHS Foundation Trust Birmingham Children's Hospital and Charity Cambridge Rare Disease Network

26/03/2026

Tonight is the night!
Join the AS Global Webinar Community Webinar
Compassion without burnout, support yourself while supporting others.

📅 Thursday 26th March 2026 | 7:00pm – 8:00pm (GMT, UK time)
📍 Microsoft Teams, Online
Join our supportive and engaging workshop designed for caregivers and individuals affected by Alström Syndrome. Together, we’ll explore practical techniques to reduce stress, build resilience, and prioritise your wellbeing.

This friendly session offers a safe space to connect, share experiences, and learn strategies you can use in everyday life. You’ll leave feeling empowered, supported, and better equipped to care for yourself while supporting others.

Discover self-care and wellbeing strategies to help you manage compassion fatigue, burnout, and sensory overload within the Alström community.

We will Cover:
What is compassion fatigue?
What is burn out?
Coping tips & strategies
What is self care and how can we use it to combat compassion fatigue and burn out?
What is sensory overload?
Signs of, and ways to work with sensory overload

Register to attend.
Alstrom Syndrome International Initiative Alström ASSAI APS - Associazione Sindrome di Alström Italia Síndrome de Alström España Asociacia Alströmovho syndromu -Slovensko Alstrom Syndrome Canada Alström Syndrom e.V. Alström sindrom-Hrvatska
69af2d66-ca3f-4942-b771-750e3b17ec40@b72943d1-a23d-477d-b9ee-07b09bc1c27e" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/69af2d66-ca3f-4942-b771-750e3b17ec40@b72943d1-a23d-477d-b9ee-07b09bc1c27e

24/03/2026

Plans on Thursday night? - you do now...

You're invited to the AS Global Webinar - Compassion without burnout, Support yourself while supporting others.

When: Thursday 26th March 2026, 7:00 - 8:00 pm (GMT, UK time)

Join our supportive and engaging online workshop designed for caregivers and individuals affected by Alström Syndrome.
Together, we’ll explore practical techniques to reduce stress, build resilience, and prioritise your wellbeing.
This friendly session offers a safe space to connect, share experiences, and learn strategies you can use in everyday life. You’ll leave feeling empowered, supported, and better equipped to care for yourself while supporting others.

Alstrom Syndrome International ASSAI APS - Associazione Sindrome di Alström Italia Initiative Alström Alström Syndrom e.V. Asociacia Alströmovho syndromu -Slovensko Alstrom Syndrome Canada Alström sindrom-Hrvatska Síndrome de Alström España

Register today via the link below:
69af2d66-ca3f-4942-b771-750e3b17ec40@b72943d1-a23d-477d-b9ee-07b09bc1c27e" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/69af2d66-ca3f-4942-b771-750e3b17ec40@b72943d1-a23d-477d-b9ee-07b09bc1c27e

19/03/2026

Axe Throwing is taking the lead! 🪓🔥

It’s amazing to see so many families already signed up for our Family Festival – and this activity is proving a big hit!

Have you booked your spot yet?

Join us on 11th July at New College Worcester for a day full of fun, sport, and activities for everyone to connect together.

Follow the link to book your place today!
Alstrom Syndrome International Alstrom Syndrome Canada Asociacia Alströmovho syndromu -Slovensko Alström Syndrom e.V. Alström sindrom-Hrvatska Síndrome de Alström España ASSAI APS - Associazione Sindrome di Alström Italia Millie's journey with Alström Syndrome and Giant Bolster Macy's world
https://forms.gle/kaV3dtYzxfTXETzXA

19/03/2026

Join us on the 26th March 2026, 7–8pm (GMT,UK time) for a friendly and supportive AS Global webinar focused on wellbeing in the Alström community.

💙 Compassion without burnout 💙
Support yourself while supporting others

Together, we’ll explore simple, practical strategies to help manage compassion fatigue, burnout, and sensory overload. Whether you’re a caregiver or living with Alström Syndrome, this session is designed to support you.

✨ Learn ways to reduce stress
✨ Build resilience
✨ Prioritise your own wellbeing

Take this time for yourself, connect with others, and leave feeling empowered and supported.

👉 We’d love to see you there!

Alstrom Syndrome International Initiative Alström ASSAI APS - Associazione Sindrome di Alström Italia Alström Syndrom e.V. Síndrome de Alström España Alstrom Syndrome Canada Alström Angels Asociacia Alströmovho syndromu -Slovensko Alström sindrom-Hrvatska

Register Today!
69af2d66-ca3f-4942-b771-750e3b17ec40@b72943d1-a23d-477d-b9ee-07b09bc1c27e" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/69af2d66-ca3f-4942-b771-750e3b17ec40@b72943d1-a23d-477d-b9ee-07b09bc1c27e

16/03/2026

Thank you Jesy Nelson for shining a spotlight on Rare Conditions and raising awareness of this ultra-rare condition Alström Syndrome and making these incredible Mums feel so special on Mothers Day. Annalise Sykes Bailey Spinal Muscular Atrophy UK
Alstrom Syndrome International Alstrom Syndrome Initiative Alström Alström Syndrom e.V. Alström sindrom-Hrvatska Síndrome de Alström España Asociacia Alströmovho syndromu -Slovensko Macy's world Genetic Alliance UK RARE Revolution Magazine Beacon for Rare Diseases Cambridge Rare Disease Network

10/03/2026

What a fabulous team at Birmingham Children's Hospital, showing such care and support for our children and families affected by Alstrom Syndrome.
You really do make a difference every day.

Did you know we run services for three ultra rare types of diabetes? Two of the three are the only specialised clinics in the country.

The sessions are led by our Clinical Nurse Specialists Pete, Kirsty and Sue (pictured), consultants and supported by dietitians, physiotherapists and a transition co-ordinator Marie (also pictured).

During , we’ll be focusing on each of the conditions:

Alstrom Syndrome, Wolfram Syndrome and Bardet-Biedl Syndrome.

10/03/2026

Introducing Kirsty Louise Mobberley and the fabulous team supporting families at the AS clinics.

Meet Kirsty – she’s our lead nurse for the Alstrom Syndrome (AS) service, working alongside a team who deliver outpatient clinics for children with the rare condition.

Patients come to us from across the country for specialised care as it’s the only service in the country.

Features of the condition can be:

➡️ Nystagmus (Wobbly eyes)

➡️ Visual impairment

➡️ Sensitivity to light (photophobia)

➡️ Heart failure caused by cardiomyopathy

➡️ Hearing loss

➡️ Obesity and insulin resistance

➡️ Type 2 diabetes

➡️ Fatty liver disease

It is important to remember, AS features may develop at different stages and not everyone is affected by all of the symptoms. Even amongst siblings the symptoms can vary.

Working with Kirsty are Catarina Leal our Specialist Alstrom and diabetes Dietitian, Dr Melanie Kershaw, Consultant Endocrinologist, Marie McGee, Transition Coordinator, Jemma Mears our Physiotherapist.

05/03/2026

Rare Disease Day 2026 – All About Equity 💙🦓

What an incredible Rare Disease Day! From powerful conversations and presentations in Westminster to advocates, families and organisations coming together to raise awareness — this collage captures just a few of the amazing moments from the day.

Rare Disease Day is about shining a light on the experiences of people living with rare conditions and continuing the push for equity in healthcare.

If you’d like to hear more of the inspiring conversations behind this theme, take a listen to the fantastic Breaking Down Barriers All About Equity podcast series, where voices from across the rare disease community share their insights and experiences.

🎧 Listen here:
https://breaking-down-barriers.org.uk/rare-disease-day-2026/

Together we can keep raising awareness, breaking down barriers and working towards a fairer healthcare system for everyone.
Gene People UK Genetic Alliance UK RARE Revolution Magazine Cambridge Rare Disease Network National Organization for Rare Disorders, Inc. (NORD) Beacon for Rare Diseases Bardet-Biedl Syndrome UK Rare Disease DayCiliopathy Alliance Alstrom Syndrome Alström Syndrom e.V. Initiative Alström Alstrom Syndrome International Asociacia Alströmovho syndromu -Slovensko Alström sindrom-Hrvatska Macy's world Síndrome de Alström España ASSAI APS - Associazione Sindrome di Alström Italia Sickle Cell Society UK NHS

04/03/2026

Happy Holi to everyone who is celebrating today.

Also known as the festival of spring or the festival of love, Holi is one of the most celebrated festivals in India and many other countries around the world. It celebrates the triumph of good over bad and the coming of spring, bringing people together in a colorful celebration of joy and joy.

What a colourful celebration!

The Hindu festival, which celebrates the victory of good over evil, also marks the end of winter.

03/03/2026

🎉 ASUK Family Festival 2026 – Have a Go Sports Day! 🎉

📅 Saturday 11th July 2026
⏰ 10am–4pm
📍 New College Worcester

Join us for our very first Family Festival — a day to connect, hear exciting research updates, and enjoy a wide range of fully accessible and inclusive activities including archery, tennis, judo, pony rides, swimming, go-karts, inflatables and more!

✨ Thanks to Sport England funding, the whole event — including activities, food and refreshments — is completely FREE.

🔗 Book your place here:
https://forms.gle/4p3ieVo2nb3CnkFj9

Travel support may be available — contact Sarah (sarah.oliver@alstrom.org.uk | 07917 958502).

Secure your place today — we can’t wait to see you there.

Family Festival! Have a Go Sports Event A Celebration of Possibilities, Connections and Unforgettable Moments When: Saturday 11th July 2026 - 10:00am – 4:00pm Where: New College Worcester School and College, Whittington Rd, Worcester WR5 2JX ASUK is thrilled to invite you to our very first Family ...