Alström Syndrome UK

06/05/2026

Our Chief Executive, Kerry Leeson-Beevers also shares her knowledge and experience as a Ciliopathy Alliance Trustee.
At this conference she was contributing her experience of good practice in rare disease Patient and Public Involvement and Engagement, ensuring patients voices are always included.

Our trustees, Kerry Leeson-Beevers and Audrey Hughes, contributed to the “Good Practice in Rare Disease PPIE” session at the latest Rare Disease Research UK Annual Conference.

06/05/2026

We’re proud to announce that Alström Syndrome UK has achieved the PIF TICK quality mark for trusted health information.

The PIF TICK is awarded to organisations that meet high standards in producing clear, accurate, evidence-based health information people can trust.

For our community, this means confidence that the information and resources we provide are reliable, accessible, and developed with care.

This is an important milestone for ASUK and reflects our commitment to supporting everyone affected by Alström Syndrome with trusted information and guidance.

Thank you to everyone who helped make this possible.

You can find out more on our news page:
https://www.alstrom.org.uk/asuk-achieves-pif-tick-quality-mark/

Patient Information Forum - PIF Alstrom Syndrome International ASSAI APS - Associazione Sindrome di Alström Italia Initiative Alström Alstrom Syndrome Australia Alstrom Syndrome Canada Alström Sendromu Türkiye Asociacia Alströmovho syndromu -Slovensko Síndrome de Alström España Genetic Alliance UK

05/05/2026

We are stronger together 💙

This World Alström Day, people from across the community came together to raise awareness, share their stories and support one another.

By working together, we are making Alström Syndrome visible; so that no one feels alone on their journey.

Every photo, every story, every voice matters.

Thank you for being part of this incredible community.

Alstrom Syndrome International ASSAI APS - Associazione Sindrome di Alström Italia Alstrom Syndrome Australia Alstrom Syndrome Canada Síndrome de Alström España Alström Sendromu Türkiye Initiative Alström Alström Angels Alström Syndrom e.V. Asociacia Alströmovho syndromu -Slovensko Alström sindrom-Hrvatska

https://www.alstrom.org.uk/world-alstrom-syndrome-day/

05/05/2026

We are delighted to announce that TomCat UK who specialise in award winning, adapted trikes for children, young people and adults will be attending the Family Festival in July Tomcat SNI Ltd

When: 11th July 2026
Where: New College Worcester New College Worcester

Secure your place today to have a go on these adaptive trikes.
https://forms.gle/2nhxwkaCXwhKHa728

https://tomcatuk.org/

Adaptive trikes for disabled children and teenagers, custom built in the UK to suit every child's unique needs.

05/05/2026

Hear more voices from our Alström Community for World Alström Day.

Together we can make Alström Syndrome visible.



Alstrom Syndrome InternationalASSAI APS - Associazione Sindrome di Alström Italia Alstrom Syndrome Australia Alstrom Syndrome Canada Alström Sendromu Türkiye Alström Angels Síndrome de Alström España Initiative Alström Alström Syndrom e.V. Asociacia Alströmovho syndromu -Slovensko Alström sindrom-Hrvatska

https://www.alstrom.org.uk/world-alstrom-syndrome-day/

03/05/2026

Hearing from our community on World Alstrom Day.

In a world that measures strength by sight,
You shine with a different, deeper light.
Though your path is paved with a rare design,
Arthur-Junior, I am proud to call you mine.

Alström is a shadow that follows the day,
Trying to quiet the senses or stand in the way.
But it cannot dim the spirit you hold,
A story of courage, brave and bold.

We navigate the echoes and hold to the sound,
Of a love so steady, so fierce and profound.
While the world sees the struggle or what might be lost,
I see a hero who counts every cost.

You teach me to listen, to feel, and to be,
To find all the beauty that eyes cannot see.
On this day of awareness, let the whole world hear:
You are magic, my son, my worrier and I’m holding you near.

03/05/2026

Raising awareness on World Alstrom Day.

We hear from Alyssa Kielty and her family in Australia as they establish Alstrom Syndrome Australia

Let's raise awareness and connect together.
Alstrom Syndrome International ASSAI APS - Associazione Sindrome di Alström Italia Asociacia Alströmovho syndromu -Slovensko Alström sindrom-Hrvatska Alström Syndrom e.V. Alstrom Syndrome Canada Alström Angels Alström Sendromu Türkiye Initiative Alström

03/05/2026

World Alstrom Syndrome Day is here!

Let's come together and raise awareness and share the voices of the community.

https://www.alstrom.org.uk/world-alstrom-syndrome-day/



Alstrom Syndrome International ASSAI APS - Associazione Sindrome di Alström Italia Asociacia Alströmovho syndromu -Slovensko Alström Syndrom e.V. Síndrome de Alström España Genetic Alliance UK Alstrom Syndrome Canada Cambridge Rare Disease Network Alström sindrom-Hrvatska Alström Sendromu Türkiye Alström Angels Alstrom Syndrome Australia Metabolic Support EURORDIS-Rare Diseases Europe Alstrom Syndrome Macy's world

03/05/2026

World Alstrom Syndrome Day is today!

Let's come together and raise awareness and the voices of the community.

https://www.alstrom.org.uk/world-alstrom-syndrome-day/



Alstrom Syndrome International Asociacia Alströmovho syndromu -Slovensko Alström Syndrom e.V. Síndrome de Alström España Alström sindrom-Hrvatska Alstrom Syndrome Canada Alström Sendromu Türkiye Alstrom Syndrome Australia Genetic Alliance UK Alstrom Syndrome Annalise Sykes Bailey Kerry Leeson-Beevers Alström Angels

01/05/2026

💙 The voices behind this World Alström Day campaign.

Behind every post is a person.

Behind every image is a story.

And behind this campaign is a global community coming together to raise awareness of Alström Syndrome.

Thank you to everyone who has shared their experiences and photos; your voices are helping others feel seen, understood, and not alone.

📸 Keep sharing your photos and voices with us, we would love to feature you.

Find out how you can get involved on the dedicated webpage
https://www.alstrom.org.uk/world-alstrom-syndrome-day/

🌍 Together, we are making Alström Syndrome visible
Alstrom Syndrome International ASSAI APS - Associazione Sindrome di Alström Italia Alstrom Syndrome Australia Alström Sendromu Türkiye Alström sindrom-Hrvatska Alström Syndrom e.V. Síndrome de Alström España Alstrom Syndrome Canada Millie's journey with Alström Syndrome and Giant Bolster Alström Angels Genetic Alliance UK RARE Revolution Magazine Cambridge Rare Disease Network Beacon for Rare Diseases Asociacia Alströmovho syndromu -Slovensko Metabolic Support RNIB Deafblind UK Guide Dogs UK EURORDIS-Rare Diseases Europe

01/05/2026

Research is giving us hope.

Global research is helping us better understand Alström Syndrome, improve clinical care, and explore future treatments.

While there are still challenges, progress is being made, and every step forward brings us closer to new possibilities.

📲 Share to help raise awareness and support continued research.
Find out more and download graphics to share on World Alström Day on the 3rd May:
https://www.alstrom.org.uk/world-alstrom-syndrome-day/

A rare condition. A global community.



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