Alström Syndrome UK

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

08/09/2026

💙 Alström Parent/Carer Chats are back!

Our friendly online Parent/Carer Chats are restarting tomorrow, Wednesday 9th September at 1.00pm (BST), and we’d love you to join us.

Have you ever wished you could chat with another parent or carer who understands or perhaps you’ve picked up tips and experiences along the way that could really help another family living with Alström Syndrome?

These informal online chats are a chance to come together, ask questions and share experiences, or simply have a chat and connect together.

Although the chats originally started for parents of school-age children, we’ve now opened them up to all parents and carers of children and adults with Alström Syndrome. We know there is so much knowledge, experience and support within our community that can be shared with one another. 💙

📅 Our next chat: Wednesday 9 September
⏰ Time: 1.00pm
💻 Where: Online

If you’d like to join us, please email [email protected] and Clair will send you the joining link nearer the time.

Can’t make the daytime chat? Please still get in touch! We know daytime meetings won’t work for everyone, so we’ll also arrange an evening catch-up for those who would like to be involved.

Whether you have questions, experiences to share, or would simply like to connect with other families, you’ll be very welcome.

We hope to chat with you soon!

Alstrom Syndrome Australia Alstrom Syndrome International Alstrom Syndrome Canada Alström Sendromu Türkiye ASSAI APS - Associazione Sindrome di Alström Italia Asociacia Alströmovho syndromu -Slovensko Initiative Alström

11/08/2026

Join us for our next AS Global webinar!

We’re excited to introduce our new Beyond Sight Series, beginning with an exploration of the world of Meta Smart Glasses.

📅 Date: 24th September 2026
🕖 Time: 7:00–8:00 pm (UK time, BST)

You may have heard people talking about Meta Smart Glasses and the growing impact they are having around the world. But what exactly are they, and what can they do?

You may also have heard how these glasses are helping people on their journeys towards greater independence and autonomy. But how can they help in everyday life, and what challenges do they present for our community?

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.

Register to attend using the link below:
ce70ce13-d9fc-4fd8-a6c4-df1037b0c655@b72943d1-a23d-477d-b9ee-07b09bc1c27e?source=copyLinkLegacyShareLinkDialog" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/ce70ce13-d9fc-4fd8-a6c4-df1037b0c655@b72943d1-a23d-477d-b9ee-07b09bc1c27e?source=copyLinkLegacyShareLinkDialog

We hope you can join us!
Alstrom Syndrome International Alstrom Syndrome Australia Alstrom Syndrome Canada Alström Sendromu Türkiye Asociacia Alströmovho syndromu -Slovensko Síndrome de Alström España ASSAI APS - Associazione Sindrome di Alström Italia Initiative Alström Melissa Crowland Kerry Leeson-Beevers

Microsoft Virtual Events Powered by Teams

10/08/2026

Grants for Holidays and Day Trips 2026.
We know how expensive summertime can be so we have put together some information on our website that may be able to help.

Now we are approaching summer and we know how expensive summertime can be so we have put together some information below that may help.

03/08/2026

Family Festival Highlights, Special Memories from a Truly Special Day!

03/08/2026

📸 Relive the memories from the ASUK Family Festival 2026! 💙

What an incredible day it was! From trying new sports and meeting amazing animals to spending time with friends old and new, it was a fantastic celebration of our wonderful Alström community.

We've now added the highlights into a Family Festival 2026 Report to our website, along with a photo gallery of some of our favourite moments from the day. We hope it brings back lots of happy memories! 😊

👉 Check it out on the ASUK website: https://www.alstrom.org.uk/family-festival-a-day-to-remember-2/

If you joined us, we'd really appreciate it if you could spare just a few minutes to complete our feedback form. Your comments help us understand what worked well and, importantly, how we can make future events even better for everyone.

📝 Complete the feedback form here: https://forms.gle/S8YKZiWbYDRoT9xu9

A huge thank you once again to everyone who attended, volunteered, delivered activities and helped make the day such a success New College Worcester Guide Dogs UK Tomcat SNI Ltd Sense
Seeing over 90 people come together to celebrate, connect and try something new was truly special.

We'd also love to hear your favourite memories from the day, so feel free to share them in the comments below! 💙
Alstrom Syndrome Australia Alstrom Syndrome Canada Alstrom Syndrome International Alström Sendromu Türkiye ASSAI APS - Associazione Sindrome di Alström Italia Asociacia Alströmovho syndromu -Slovensko Kerry Leeson-Beevers

23/07/2026

Let's celebrate 5 years of AS Global. 🌍💙

What began as a shared vision to bring the global Alström community closer together has grown into a global network of collaboration, friendship and hope.

Over the past five years we have worked alongside individuals, families, clinicians, researchers and organisations across the world to share knowledge, strengthen partnerships and connect people together.

Together we have:
💙 Connected the global Alström community.
💙 Supported collaboration between countries.
💙 Shared knowledge and resources.
💙 Helped amplify the voices of people living with Alström Syndrome.
💙 Worked towards a future where no family feels alone.

None of this would have been possible without the incredible dedication of our partners, volunteers, healthcare professionals, researchers and, most importantly, our families.

As we celebrate this milestone, we're also looking ahead with excitement. Building on everything we've achieved together, we're looking forward to the next chapter, including new opportunities to strengthen collaboration, inclusion, research and support even further.

Thank you to everyone who has been part of the AS Global journey over the past five years. Here's to the next five! 🌍✨

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

23/07/2026

The charity VICTA UK have opened their 2026 Grant funding.

The 2026 applications will be considered for children and young people who are registered as blind or severely sight impaired (SSI) from the age of 8, up to and including the age of 29 years and who are permanent residents in the UK. The programme is designed to help young people build or maintain their independence and retain control of their lives and leisure time.

Check out more information on their website:

VICTA grant scheme for children and young adults who are severely sight impaired In 2026 applications will only be considered for children and young people who are registered or are registerable as blind or severely sight impaired (SSI) from the age of 8, up to and including the age of 29 years and....

16/07/2026

💙 What an incredible day!

Thank you to everyone who joined us at our ASUK Family Festival 2026. An amazing 90 people came together for a day of fun, friendship and new experiences!

We've shared a round-up of the day on our website, along with our Family Festival feedback form.

If you attended, we'd really appreciate it if you could spare just 5 minutes to tell us what you thought. Your feedback will help us make future events even better!

👉 You can share your thoughts on the link below
https://forms.gle/ann6NuuEabTKEZS49

Thank you once again for helping make the day so special! 💙

Alstrom Syndrome International Alstrom Syndrome Australia ASSAI APS - Associazione Sindrome di Alström Italia Alström Syndrom e.V. Alström Sendromu Türkiye New College Worcester Guide Dogs UK Tomcat SNI Ltd Pam Nagra Kerry Leeson-Beevers Annalise Sykes Bailey Macy's world

https://www.alstrom.org.uk/family-festival-a-day-to-remember/