Alström Syndrome UK

Alström Syndrome UK Alström Syndrome UK supports children and adults diagnosed with Alström Syndrome and their families.

Holidays on the horizon?We know at this time of year many of you will be longing for warmer climates and starting to boo...
22/01/2026

Holidays on the horizon?

We know at this time of year many of you will be longing for warmer climates and starting to book those holidays!

It can often feel daunting thinking about how to get travel insurance when you live with a health condition, so we have brought together some helpful guides from trusted websites in the UK to support you in your search. Pop along to the ASUK website to find further information.
Alström Syndrom e.V. Alstrom Syndrome Initiative Alström Millie's journey with Alström Syndrome and Giant Bolster Alstrom Syndrome International
https://www.alstrom.org.uk/travel-insurance/

15/01/2026

Hear from Catherine Lewis from Breaking Down Barriers about why your voice and experiences of equity really do matter on Rare Disease Day.

Please get in touch with Catherine by email catherine.lewis@alstrom.org.uk and help us show together why equity matters.

Alstrom Syndrome Millie's journey with Alström Syndrome and Giant Bolster Macy's world ASSAI APS - Associazione Sindrome di Alström Italia Alstrom Syndrome International Genetic Alliance UK Cambridge Rare Disease Network RARE Revolution Magazine EURORDIS-Rare Diseases Europe Beacon for Rare Diseases Gene People UK Sickle Cell Society UK Gene People UK The Children's Hyperinsulinism Charity National Organization for Rare Disorders, Inc. (NORD) WellChild - the national charity for sick children Ataxia-Telangiectasia A-T Society Birmingham Children's Hospital and Charity

Meet some of our everyday heroes in 2025!Throughout 2025, ASUK has been supported by some incredible fundraisers – doing...
14/01/2026

Meet some of our everyday heroes in 2025!

Throughout 2025, ASUK has been supported by some incredible fundraisers – doing amazing challenges to support our cause.

Thank you to everyone who continues to support ASUK, every penny really does make a difference.

Alstrom Syndrome ASSAI APS - Associazione Sindrome di Alström Italia Alstrom Syndrome International Millie's journey with Alström Syndrome and Giant Bolster Aidan Reilly Sara Wyn Williams

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 2

Delighted to announce that due to Sport England funding we can now hold our First ASUK Family Festival!When: 11th July 2...
13/01/2026

Delighted to announce that due to Sport England funding we can now hold our First ASUK Family Festival!

When: 11th July 2026
Where: New College Worcester

Come and join us for a day of FREE activities designed for all ages.
Try sports and activities you never thought possible and meet new and old friends.

Come for the fun, stay for the friendships!

Reserve your FREE place today, email Catherine.lewis@alstrom.org.uk

Alstrom Syndrome Millie's journey with Alström Syndrome and Giant Bolster Macy's world Alstrom Syndrome International

https://www.alstrom.org.uk/family-festival/

As storm Goretti sets to hit the UK later today bringing snow, ice and wind. The Met Office, which describes the storm a...
08/01/2026

As storm Goretti sets to hit the UK later today bringing snow, ice and wind.

The Met Office, which describes the storm as a "multi-hazard event", has issued an amber warning for snow and heavy winds in parts of England and Wales, and a number of yellow weather alerts across large swathes of the UK.

The Met Office has issued five things households should do to prepare. These are:

1 - Plan routes and check for delays and road closures.
People have been advised to complete their journeys before the bad weather hits on Thursday evening.
Drivers are urged to leave plenty of time for travel and check their wipers, tyres and screen wash before heading out.
Essentials should also be packed in the car in case you break down or get stuck.
These includes things like an in-car phone charger, warm clothes and blankets, high-visibility clothing, jump leads, an empty fuel can, food and drink, a shovel and warning triangles.

2 - Driving safely
Motorists should use dipped headlights, accelerate gently and start in second gear if possible, which can help with wheel slips.
Alongside keeping a safe distance to other vehicles, drivers should keep a constant speed up hills and use a low gear for going downhill.

3 - Prepare items in case your home gets cut off
You could be without food, heat or light if you are cut off by snow and can't access services and amenities for a number of days.

To prepare, make sure to have: torches and batteries, candles, matches or lighters and plenty of blankets and warm clothing to hand.

4 - Keep home safe
If your property does get cut off, the Met Office has advised on doing certain things to keep your home safe.

These include:
- Create a comfortable place for your pets
- Turning off electrical heaters and put out your fire before going to bed to avoid a fire
- Ensure the thermostat is set to the same temperature, both during the day and at night
- Open kitchen and bathroom cabinet doors to allow warmer air to circulate around pipes, preventing them from freezing
- Stay indoors and wear layers of loose-fitting clothing, rather than bulky clothing, to stay warm
- Don't use a hob to heat your home due to the risk of carbon monoxide levels

5 - Have these items to hand in case of a power cut
The Met Office said: "The essentials that could help you cope with a power cut are:
- candles and matches or lighters,
- torches and batteries,
- a mobile phone power pack

It will also affect people with complex health conditions, who may feel isolated and struggle to keep warm in these conditions - remember to check on your loved ones and neighbours.

Stay safe everyone and look after each other.

Fresh snow and wind warnings come into place as Storm Goretti arrives on Thursday.

Rare Disease Day 2026 is all about equity — and what it really means for people living with rare conditions.Because let’...
06/01/2026

Rare Disease Day 2026 is all about equity — and what it really means for people living with rare conditions.

Because let’s be honest… rare conditions don’t come in one shape, one story, or one solution. So equity can’t be one-size-fits-all either.

We’d love to hear what equity means to you — and what would make life fairer for you or your family.

Whether it’s the postcode lottery, mental health support, parenting, education, disability, navigating care as a young person, or experiences as part of a diverse or under-represented community, living with a complex condition or any other barriers you have faced.

Share your story, these can include photos or videos, or let us know if you would like to be involved in a podcast — your voice can help drive change.

Thank you for helping us show what equity really looks like.
Send your experiences to Catherine Lewis by email: catherine.lewis@alstrom.org.uk

Alstrom Syndrome Alstrom Syndrome International ASSAI APS - Associazione Sindrome di Alström Italia Initiative Alström Alström sindrom-Hrvatska Millie's journey with Alström Syndrome and Giant Bolster Macy's world RNIB Deafblind UK Breaking Down Barriers Sense Metabolic Support UK Sickle Cell Society UK Genetic Alliance UK Gene People UK EURORDIS-Rare Diseases Europe Cambridge Rare Disease Network RARE Revolution Magazine Beacon for Rare Diseases National Organization for Rare Disorders, Inc. (NORD)

Happy New Year from everyone at Alström Syndrome UK.We would like to take this opportunity to thank everyone who has sup...
06/01/2026

Happy New Year from everyone at Alström Syndrome UK.

We would like to take this opportunity to thank everyone who has supported us throughout 2025. As we look ahead to 2026, we do so with hope and optimism. We are excited to be preparing new research projects set to get under way in the coming months, and we are looking forward to sharing more about these soon.

We know many of you will be thinking through those New Year resolutions. We would love to hear what these are...

Why not start with the New nhs.uk Healthy Choices Quiz?

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

Take our quiz to see how you could improve your health and wellbeing. Take the first step today – let's do this!

In case you missed our Festive round up...Follow the link below - In this festive-e-news, you’ll find a few gentle ways ...
19/12/2025

In case you missed our Festive round up...

Follow the link below -

In this festive-e-news, you’ll find a few gentle ways to support yourself and get involved — from top tips to help stay calm through the festive chaos, to an exciting save the date for our very first Family Festival, coming this summer. You’ll also find opportunities to share your voice as part of the Rare Disease Day campaign, helping to raise awareness and make sure lived experiences are heard.

We are so grateful to each and every one of you for being part of our diverse, supportive and compassionate community. As the year draws to a close, we send our warmest wishes to you and those close to you, and we look forward to walking alongside you in the year ahead.

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

https://mailchi.mp/e00f86feaa8f/festive-news-from-asuk

The festive season begins at Alström Syndrome UK.Share with us your festive fashion... let's inspire each other and shar...
01/12/2025

The festive season begins at Alström Syndrome UK.

Share with us your festive fashion... let's inspire each other and share together some joy this festive time.

We can't wait to see your festive photos!

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

First goal in year for striker after Teddy kisses his boots!"Best day of my life"Read all about this amazing story on th...
27/11/2025

First goal in year for striker after Teddy kisses his boots!

"Best day of my life"

Read all about this amazing story on the BBC News page

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

Teddy, 10, met his favourite player Patson Daka ahead of the match against Stoke City on Saturday.

Wow!!Making dreams come true for Teddy and his Dad.Amazing - thank you Leicester City Football ClubAlstrom Syndrome
24/11/2025

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

The Family Fund and Variety the Children's Charity of Great Britain have joined forces, to deliver TOGETHER - a new gran...
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.

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Torquay
TQ27GD

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

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