Alström Syndrome UK

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 ...

02/03/2026

Rethinking Equity: From Voice to Action

Rethinking equity means asking those difficult questions.
Are patients valued?
Are voices truly heard?
Can trust be rebuilt?
Does information empower — or exclude?

For Rare Disease Day, we’re amplifying lived experience and pushing for real change.

🔗 Explore the full Breaking Down Barriers campaign and podcasts here:
https://breaking-down-barriers.org.uk/rare-disease-day-2026/

Genetic Alliance UK Gene People UK Rare Disease Day RARE Revolution Magazine Beacon for Rare Diseases EURORDIS-Rare Diseases Europe National Organization for Rare Disorders, Inc. (NORD) Cambridge Rare Disease Network Genomics England NHS UK Government RareQoL Diversity Trust Bardet-Biedl Syndrome UK Birmingham Children's Hospital and Charity University Hospitals Birmingham NHS Foundation Trust Sickle Cell Society UK

02/03/2026

💜 Our Breaking Down Barriers Rare Disease Day Special Edition E-News Has Just Landed!

We’ve just shared a powerful Rare Disease Day e-newsletter packed with real voices, lived experience, new reports, national policy updates and heartfelt reflections on what equity really means for people living with rare conditions.

From emotional podcast conversations to insights from the Westminster Rare Disease Day Reception, this special edition highlights the strength, courage and wisdom of our community.

👉 Read it here:
https://mailchi.mp/alstrom/rare-disease-day-special-powerful-voices-real-change

Thank you to everyone who shared their experiences so honestly — your voice truly matters and helps drive real change.

Genetic Alliance UK Gene People UK Ciliopathy Alliance Alström Syndrom e.V. Alstrom Syndrome Alstrom Syndrome International Alstrom Syndrome Canada Alström Syndrom e.V. Asociacia Alströmovho syndromu -Slovensko Síndrome de Alström España RARE Revolution Magazine Beacon for Rare Diseases Rare Disease Day Bardet-Biedl Syndrome UK Sickle Cell Society UK Cambridge Rare Disease Network Guide Dogs UK

28/02/2026

Rare Disease Day is today!
..and we've been out and about from Westminster to Wales, raising awareness and sharing the lived experiences of our community.

Check out the Rare Disease Day All About Equity Podcast on the Breaking Down Barriers website.

Please share far and wide.
https://breaking-down-barriers.org.uk/rare-disease-day-2026/

Genetic Alliance UK Rare Disease Day RARE Revolution Magazine Bardet-Biedl Syndrome UK Cambridge Rare Disease Network EURORDIS-Rare Diseases Europe Ciliopathy Alliance National Organization for Rare Disorders, Inc. (NORD) Gene People UK Kerry Leeson-Beevers Alstrom Syndrome International ASSAI APS - Associazione Sindrome di Alström Italia Síndrome de Alström España Asociacia Alströmovho syndromu -Slovensko Alström sindrom-Hrvatska Alström Syndrom e.V. Initiative Alström
https://breaking-down-barriers.org.uk/rare-disease-day-2026/

28/02/2026

Loved being part of this, raising awareness of rare conditions and working with such a fabulous team.