Latest News
Date: 28 Feb, 2023 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
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…
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 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
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
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.