AS Global

AS Global

Our aim is to bring families, Clinicians and Researchers together to work in collaboration so we can learn more about this ultra-rare complex condition, so we can improve the lives of those affected.

On the 4th and 5th December 2020, ASUK were delighted to hold the first ever, virtual Alström Syndrome Global conference.

You can read a summary of both days, including lots of insights and further information in the conference report HERE

In true 2020 style, the Alström global community came together from 23 countries and took a virtual tour of the world, with insights from AS experts and inspiring personal presentations from families.
It was certainly a global affair with presenters from China, France, Scotland, Italy and here in the UK.

Some of the feedback we have received from families about what they enjoyed about the conference:

“Today was great!! Understandable for the parents and patients. If we can’t be in person, this is the next best thing.”

“I enjoyed all of it, something there for everyone. I can really see how the involvement of children, young people and families are helping to shape the charity. Loved hearing from clinicians, researches and workers within ASUK. Some minor problems with technology but this did not impact upon my enjoyment of the presentations. Clinicians sessions were very thought provoking and raised many questions for me. ASUK is really developing as a charity, the CEO presented really well giving a confident performance.”

The programme was full of clinical and research updates from around the world, as well as top tips to stay healthy and personal experiences from families too. You can download the agenda here

Both days of the conference were recorded:

The Friday sessions can be found HERE

The Saturday sessions can be found HERE

The only areas of the recording which can’t be viewed on this video, is the videos which we played during the event.  You can find these videos below:

The video explaining all about the patient registry and how you can get involved, can be viewed below:

The beautiful piano rendition by Jamie Seeger in America, can be viewed below, it also contains some of your most precious photos.

Kerry gave an insightful presentation about Telemedicine clinics, this video can be viewed below:

Trying to keep our community fit and healthy is one of our goals and you can view the fun-filled ‘Stroove’ exercise video below:

We hope this will be the first global conference of many!

We look forward to seeing you all at the next one!!

Alström Global Virtual Conference

Be Inspired. Be You. Be Together


Bringing together families and professionals to connect, share and inspire one another from around the world.

It will be a truly global affair, with speakers from the UK, Italy, China, America and beyond, joining us to share their knowledge, experience and insights into this ultra-rare complex condition.

From clinical and research updates and inspiring stories from those who have a passion for everything Alström.

Interactive cosy fireside chats

Join us for cosy fireside chats…in this virtual preconference get together.

Friday 3rd December 2021 

6:30 pm – 8:30 pm (UK, GMT time)

Fireside interactive sessions bringing the AS community together to inspire and learn from one another. These sessions are mainly for people affected and their family members.

Click HERE to register for these interactive sessions.


Alström Global Conference

Saturday 4th December 2021 

2pm – 7:30 pm (UK, GMT time)

Click HERE to register for this event.


Conference Agenda

You can download the agenda below:

AS Global Conference Agenda

Please note this agenda may be subject to change due to circumstances outside of our control.