Latest News

Rare Disease Day 2023!

Date: 28 Feb, 2023  No Comments  Alstrom Admin

Happy Rare Disease Day! This day falls on the last day of February and aims to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers. Watch this years film below, highlighting the inequality faced by so many: Light up for Rare Disease Day! Light

People Power!

Date: 08 Feb, 2023  No Comments  Alstrom Admin

A Truly Accessible World for Everyone – People Power! Imagine for a moment – that you walk into your usual supermarket and every item has blank labels on them, and you can’t tell what anything in the boxes, tins and packaging is! Well, welcome to the world for those who are affected by visual impairment…

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.