Alström Syndrome UK

24/11/2025

Wow!!
Making dreams come true for Teddy and his Dad.
Amazing - thank you Leicester City Football Club
Alstrom Syndrome

24/11/2025

The Family Fund and Variety the Children's Charity of Great Britain have joined forces, to deliver TOGETHER - a new grant programme to provide disabled children with sensory toys and equipment or technology items to help with communication and learning.

Follow the link to check out if you are eligible and apply:
Alstrom Syndrome RNIB Deafblind UK Sense

Family Fund has joined forces with Variety to deliver a new grant programme to provide disabled children with sensory toys and technology.

24/11/2025

Join us for our first ever ASUK Festive Fashion Day on the 1st December 2025! ✨

Dig out your sparkles, jumpers, hats or anything that brings festive cheer — and help us make a real difference for individuals and families affected by Alström Syndrome. 🎄💫

If you’re skipping Christmas cards this year, we’d be so grateful if you’d consider making a donation to Alström Syndrome UK (ASUK) instead. Every contribution, big or small, helps us continue supporting individuals and families living with this ultra-rare condition.

📸 We’d also love to see your Festive Fashion!
Share your photos on Facebook and tell us your favourite festive memories — let’s spread joy and brighten up everyone’s timeline this December. ✨

🎁 Every penny really does make a difference.
You can donate easily and securely by following the link to JustGiving https://www.justgiving.com/charity/alstromsyndromeuk

Let’s brighten the season together — with kindness, colour and a little festive fashion! 🌟🎅
Alstrom Syndrome ASSAI APS - Associazione Sindrome di Alström Italia Millie's journey with Alström Syndrome and Giant Bolster Initiative Alström Alstrom Syndrome International Alstrom Syndrome Canada Alström Angels Alström sindrom-Hrvatska Síndrome de Alström España

24/11/2025

🌿 Webinar Update 🌿

I wanted to let you know that our upcoming AS Global Wellbeing Webinar – 'Unwrapping Calm: Coping with Burnout and Overload during the Festive Season' will be postponed, as I’m currently unwell and need a little time to recover.

It was due to take place online on the 27th November 2025 from 7:00pm (UK, GMT)

Thank you for your understanding and kindness.

A new date will be shared shortly, and I look forward to joining you then.

Wishing you and your families a calm and healthy week ahead.
Alstrom Syndrome ASSAI APS - Associazione Sindrome di Alström Italia Millie's journey with Alström Syndrome and Giant Bolster Initiative Alström Alstrom Syndrome International Alstrom Syndrome Canada Alström Angels Alström sindrom-Hrvatska Síndrome de Alström España

14/11/2025

Today is BBC Children in Need Day!

Today we’re celebrating the incredible impact Children in Need has on young people across the UK. We’ve seen first-hand how their support helps organisations like ours bring joy, confidence, and fun activities to the children and young people who need them most.

Although we’re no longer funded by Children in Need, we know just how much your fundraising matters. With only 1 in 6 projects able to receive funding, every donation truly makes a difference — and we understand this all too well.

The Body Coach Joe Wicks is LIVE today from 9.30-9.50am

Tune into tonight’s Children in Need shows to see the inspiring stories, the brilliant entertainment, and the real impact your generosity has on young lives.


Alstrom Syndrome Millie's journey with Alström Syndrome and Giant Bolster Macy's world Beacon for Rare Diseases Genetic Alliance UK Gene People UK Sense RNIB Deafblind UK Beacon for Rare Diseases Cambridge Rare Disease Network RARE Revolution Magazine

We’re There For the UK’s Children and Young People

10/11/2025

Parent Workshop Announced!

VICTA Parent Workshop – Early Intervention Sleep Support-Building Strong Foundations.

VICTA UK are providing an online session for parents of children aged 0-4 who are interested in finding out more about the importance of helping their children to develop healthy sleep habits.

This session will be an hour long presentation about the ‘back to basics’ of sleep, the impact visual impairment can have on sleep and tested strategies to amend any existing sleep issues that may be occurring. There will be 30 minutes at the end of the workshop for questions.

Pop along to the website to find out more and book your place. The workshop costs £5, ASUK can support families affected by Alström Syndrome in the UK with the costs if needed. Please get in touch.

Alstrom Syndrome Millie's journey with Alström Syndrome and Giant Bolster RNIB RNIB Scotland Deafblind UK Sense Guide Dogs UK WellChild - the national charity for sick children Bardet-Biedl Syndrome UK Devon In Sight Sight Loss Councils

Dates: 18 November 2025, 7.30pm Location: Online - Zoom Who: Parents of a child who is visually impaired Apply now

07/11/2025

Flu is spreading earlier than usual.
There are 2.4 million flu vaccine available appointments next week.

Duncan Burton, Chief Nursing Officer for England, said:
“This early rise of flu in children is particularly concerning – especially given that flu circulation in children normally precedes that in adults – so it’s vitally important those eligible come forward for their vaccine as soon as possible to avoid a long and drawn-out flu season.

You can get the free NHS flu vaccine if you:
- are aged 65 or over
- have certain long-term health conditions
- are pregnant
- live in a care home
- are a main carer or receive a carer's allowance
- live with someone who has a weakened immune system

Find out if you can get a free NHS flu vaccine and how to book.
Alstrom Syndrome Alstrom Syndrome International RNIB Deafblind UK Sense Genetic Alliance UK NHS England nhs.uk Contact - For families with disabled children Council for Disabled Children Special Needs Jungle Guide Dogs UK
➡️ http://nhs.uk/fluvaccine

06/11/2025

Calling All Researchers!
There is still time to apply for the Early Career Researcher Award in PPIE 2025.
Recognising the efforts of early researchers in adopting effective and inclusive PPIE approaches in Rare Disease in the UK.
Apply by 16th November 2025
Genetic Alliance UK
Find out more:
https://rd-research.org.uk/uncategorized/early-career-researcher-award-in-ppie-2025/

06/11/2025

Breaking Down Barriers are at the Cambridge Rare Disease Network Rare Summit 25 today...

If you are attending - pop along to our stand and discover your family features with the Tree of Life activity.

You can find out more about Breaking Down Barriers on the website https://breaking-down-barriers.org.uk/

Gene People UK Genetic Alliance UK Beacon for Rare Diseases RARE Revolution Magazine RNIB Deafblind UK Sense Genomics England

06/11/2025

Planning for the future - is often a topic, we leave for another day, but it is important to think about and plan for you and your family.

The charity, Contact - For families with disabled children have partnered with Renaissance Legal to offer webinars about planning for the future for you and your family.

In case you missed their recent webinar, you can watch this, alongside finding further information from Contact - For families with disabled children about planning for your future, and more topics and useful resources around preparing for adulthood on our website:
Alstrom Syndrome Millie's journey with Alström Syndrome and Giant Bolster Alstrom Syndrome International Initiative Alström Alstrom Syndrome Canada Alström sindrom-Hrvatska ASSAI APS - Associazione Sindrome di Alström Italia Síndrome de Alström España RNIB Deafblind UK Sense

  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 partnered with

05/11/2025

We are very excited to be attending the RARE Summit 2025 Tomorrow!

Our Breaking Down Barriers Network and The Open University GRACE Project will be collaborating to explore how our lived experiences shape our lives and our healthcare at the Cambridge Rare Disease Network RARE Summit 2025 event.

Come along to our exhibition stand and find our Tree of Traits activity, where you can explore your family features!

Alstrom Syndrome Genetic Alliance UK Beacon for Rare Diseases RARE Revolution Magazine EURORDIS-Rare Diseases Europe RNIB Deafblind UK Sense Gene People UK

Find our more about RARE Summit 2025

Celebrating 10 years of progress and impact in rare diseases, the UK’s leading multi stakeholder RAREsummit returns to Cambridge

04/11/2025

At this time of year, many of you will have had information about getting your flu vaccination, but you may be wondering why you haven't been called for your Covid-19 autumn booster.

Our AS Clinical Experts in the UK, Dr Tarek Hiwot and Dr. Shyam Madathil have given us a statement to share with you, which we hope will alleviate some of your concerns.

Dear The Alström community,

We appreciate that as the Covid vaccine programme gets underway this year you may have concerns. The Autumn 2025 Covid vaccine is being offered to people aged 75 years and over, those in older adult care homes, and those aged 6 months and who are immunosuppressed.

This is because the chance of Covid being more severe and needing hospitalisation is more in these age groups. People with Alström Syndrome do not have immune suppression and fortunately in past years we have not found them to be disproportionately affected by severe Covid illness. We have also in general seen much less number of severe Covid cases needing hospitalisation in recent years.

Side effects of the vaccine do exist, although severe side effects are rare. On balance it makes sense to take the Covid vaccine this autumn only if you are in the above mentioned risk groups, namely people aged 75 years and over, those in older adult care homes, and those aged 6 months and who are immunosuppressed.

Do feel free to get in touch with ASUK if you have any further questions or queries. Full contact information can be found on our website www.alstrom.org.uk
Alstrom Syndrome ASSAI APS - Associazione Sindrome di Alström Italia Millie's journey with Alström Syndrome and Giant Bolster Initiative Alström Alstrom Syndrome International Alstrom Syndrome Canada Alström sindrom-Hrvatska Síndrome de Alström España