Alström Syndrome UK

06/10/2026

Could you spare a few minutes to help shape better genetic healthcare?

We’re supporting a Cardiff University Master’s student with a
short online research study that could improve how outcomes
from genetic healthcare are measured.

If you:
• have a genetic condition, or
• are at risk of a genetic condition, or
• are the parent or legal guardian of a child with a genetic
condition or who is having genetic testing ..we’d really appreciate your help.

Taking part involves answering the same six questions twice,
two weeks apart. You won’t be required to do anything in
between.

Find out more and take part: redcap.link/gos-survey

06/10/2026

Join the festivity in your local area with the support of VICTA UK

VICTA are offering to reimburse the cost of your child’s ticket (up to 17 years) when you visit a Christmas experience near to you as a family. This can include a Christmas light show, Christmas pantomime, theatre show or experience; the visit must take place on or before Sunday 3 January 2027.
VICTA will reimburse up to a maximum of £25 per vision impaired child.

Check out their website to find out more...

When: Thursday 1 October 2026 to Sunday 3 January 2027 Who: Families Cost: Reimburse the cost of your VI child’s ticket up to a maximum value of £25 per child Please note: One Christmas event offer per family Join the festivity in your local area with the support of VICTAVICTA are offering to

05/10/2026

In case you missed our Beyond Sight Series webinar, where we explored sight loss and the world of Meta Glasses, you can watch the recording now.

One of the most powerful moments in our webinar came when a member of our community talked about her young daughter.

She explained:

“I have a young daughter and one of the things that bothers me is that I can’t read to her.”

After borrowing her brother’s Meta glasses, she decided to see whether they could help:

“I started to explore using one of her books and actually I was able to read, which I was astounded by.”

Technology cannot replace sight, but sometimes it can remove a barrier to something that really matters.

And that is where the potential of AI glasses becomes much bigger than the technology itself. It is about independence, choice, confidence and being able to take part in the everyday moments that matter.

Watch ASUK Wellbeing Coordinator Melissa Crowland explore the potential of Meta AI glasses and hear directly from members of our community about the difference this technology could make to everyday life.

Alstrom Syndrome Australia Alström Sendromu Türkiye Alstrom Syndrome International Alstrom Syndrome Canada Le syndrome d' Alström et Lola - Association Lola'ström Asociacia Alströmovho syndromu -Slovensko ASSAI APS - Associazione Sindrome di Alström Italia Síndrome de Alström España Initiative Alström Macy's world Millie's journey with Alström Syndrome and Giant Bolster

https://www.alstrom.org.uk/as-global/ -sight-series-meta-glasses

05/10/2026

Hot off the press - Autumn newsletter out now!

Whilst the weather begins to cool once again, grab something warm to drink and sit down for 5 minutes to read the latest ASUK Community Newsletter.

In this edition, you can read about the fabulous family festival, latest research highlights, community celebrations and exciting news from Breaking Down Barriers.

We also share top tips to make the holiday season more accessible and how to look after yourself duing this busy time of year.

Alstrom Syndrome Australia Alström Sendromu Türkiye Alstrom Syndrome International Alstrom Syndrome Canada Alström Angels Asociacia Alströmovho syndromu -Slovensko ASSAI APS - Associazione Sindrome di Alström Italia Initiative Alström Síndrome de Alström España Macy's world Millie's journey with Alström Syndrome and Giant Bolster Phoebe's Journey with Alstrom Syndrome New College Worcester
https://www.alstrom.org.uk/autumn-newsletter-26-out-now-2/

02/10/2026

Today is National Smile Day
It is a wonderful day to reflect on what makes you smile.
One day this year which was full of laughter and smiles was the Family Festival.
Pop along to the website to remember the smiles and the wonderful memories in the news post and the report:
https://www.alstrom.org.uk/family-festival-a-day-to-remember-2/

01/10/2026

🏃‍♂️ Not one but two runs - supporting our great cause! 💙

We’re incredibly grateful to Steve, husband of one of our team members, who is taking on two running events to raise funds for Alström Syndrome UK and Breaking Down Barriers. 👏

He’ll be lacing up his trainers for:
🏅 Run 1 - Trail Escape - 25km from Bristol to Bath in September
🏅 Run 2 - Bath Half Marathon 21km in March 2027

Every mile he runs will be helping us continue our work supporting individuals and families, bringing people together, raising awareness and creating opportunities for people living with rare, genetic and undiagnosed conditions.

If you can, please get behind him! 💙
https://www.justgiving.com/page/stephen-roberts-4alstromsyndrome

Even if you’re not able to donate, you can still make a difference, give this post a share and help us cheer him on! 🙌

A huge thank you from everyone at ASUK and Breaking Down Barriers, we’ll be cheering you all the way to the finish line! 🏃‍♂️🎉

Help Stephen Roberts raise money to support Alstrom Syndrome UK

22/09/2026

Would you like to know more about Smart Glasses?

Join us this Thursday 24th September 2026, 7:00 - 8:00 pm (UK, BST) for our Beyond Sight Series Webinar.

During this webinar, we’ll explore the possibilities offered by Meta Smart Glasses, look at some of the challenges and limitations, and hear different perspectives and experiences.

As always, it will also be a great opportunity to connect with our global community online, share experiences, ask questions, and have an open conversation in a safe and welcoming space.

We look forward to seeing you all there!

Register by clicking the link below:

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

Microsoft Virtual Events Powered by Teams

16/09/2026

It's Jeans for Genes UK Week!
Jeans for Genes is the annual fundraising event for the genetic condition community.
You can find lots of Gene-ius ways to get involved on their website:
https://www.jeansforgenes.org/

10/09/2026

Beyond the Sidelines

Join LOOK - supporting families living with visual impairment for their free online event in partnership with British Blind Sport on Wednesday 14th October to learn how to support your visually impaired child in sport and physical activity.

Find on more on their website:

Join our free online event on Wed 14 October to learn how to support your visually impaired child in sport and physical activity. Book your free place.

09/09/2026

🌟 Introducing the RareSource IDEA Hub

Thanks to funding from the National Lottery Community Fund, we’re excited to introduce the Breaking Down Barriers RareSource IDEA (Inclusion, Diversity, Equity and Accessibility) Hub. A new programme bringing together people with lived experience, communities, organisations and professionals from healthcare, research and beyond to connect, share, learn and collaborate.

Across the rare, genetic and undiagnosed community, there is already so much fantastic work happening from valuable resources, expertise, lived experience, good practice and innovative approaches.

We don’t want to reinvent what already exists. We want to connect people to it, share it and build on it.

The RareSource IDEA Hub will create a place to find, share and build on what works, connecting people to existing resources and expertise, while working together to identify gaps and co-create solutions where they are needed.

Through the Hub, we will:
- Connect people, communities and organisations
- Share resources, knowledge, good practice and lived experience
- Collaborate on ideas, projects and solutions
- Grow skills, confidence and capacity
- Influence policy and practice by amplifying collective voices
- Create impact by breaking down barriers and improving outcomes

Most importantly, we want the Hub to be shaped by the people, communities and organisations it is designed to support.
Whether you’re already part of the Breaking Down Barriers Network or discovering us for the first time, we’d be delighted for you to be part of this next chapter.

💙 Let’s connect what already exists, learn from one another and build what’s missing together.
👉 Find out more: https://breaking-down-barriers.org.uk/welcome-to-the.../
👉 Join the BDB Network: https://forms.gle/ec24Xce88U2euSW76