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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,


Winter Newsletter out now!!

Date: 20 Dec, 2021  No Comments  Alstrom Admin

Grab something hot and toasty and take 5 minutes to read our latest news… Read a the highlights from the AS Global Conference, how we kept youngsters entertained with a virtual teddy bears picnic and we introduce our newest online advocacy group, the Culture Sparkle Sisters!! Download a PDF copy HERE or a plain text