Latest News


Winter newsletter is out now!

Date: 10 Jan, 2023  No Comments  Alstrom Admin

Pop your feet up for five minutes and read about the latest ASUK news… Including how to get involved next year in ASUK turning 25 and plenty of useful resources and top tips to help families throughout the cost of living crisis. You can download your copy HERE you can also read a plain text document HERE


ASUK Turns 25!

Date: 14 Dec, 2022  No Comments  Alstrom Admin

ASUK will be having a silver anniversary year. ASUK will be 25 years old next year!! – it is going to be a year of get togethers and celebrations starting with a family gathering in the UK in April. Join in! We are launching the ‘Rare Moments’ Art Exhibition You are all invited to grab


Summer Newsletter is Out Now!!

Date: 05 Oct, 2022  No Comments  Alstrom Admin

It may feel like Summer is a distant memory – but here comes the ASUK Summer newsletter – full of uplifting articles of what our families have been up to over the Summer… There have been many things to celebrate such as Lexi and Adam’s wedding – HUGE congratulations to you both! There have been


World Alström Syndrome Day is HERE!!

Date: 03 May, 2022  No Comments  Alstrom Admin

3rd May 2022 Today is the first World Alström Syndrome Day!! Celebrating Carl Henry Alström who was born on the 3rd May & discovered the Syndrome. Let’s learn more about this ultra-rare condition… Make a difference today & complete the Global AS Patient Registry so we can find further treatments and manage this complex condition effectively.


AS Global Webinar ‘How I Manage My Diabetes’

Date: 17 Feb, 2022  No Comments  Alstrom Admin

Bringing the AS Global Community Together How I Manage My Diabetes Come and join us to hear from Lexi, who will be speaking about how she manages her Diabetes, the devices she has found most useful and her top tips to stay healthy. Join together with the global community and share your top tips too!


On the hunt for a Treasurer!

Date: 19 Jan, 2022  No Comments  Alstrom Admin

Trustee Treasurer Vacancy Alström Syndrome is an ultra-rare genetic syndrome that affects less than 1 in 500,000. Alström Syndrome UK (ASUK) is a patient led organisation that supports those living with the condition, their families and those working with them. Alström syndrome is a complex and life limiting condition, it causes multiple issues; visual loss,