Latest News
Date: 23 Mar, 2023 We are on the hunt for a Alström Syndrome Care Coordinator Do you relish the challenge of making a positive impact on people’s lives, supporting individuals with a rare condition and those who love and care for them? If you do, then why not apply to join the team at Alström Syndrome UK (ASUK)
Managing and Reviewing Medication AS Global is holding it’s next webinar all about Medications… What matters to you as a patient and what matters to Moms, Dads and Carers of children affected by Alström Syndrome. Antonio Ochoa-Ferraro, who is a Specialist Pharmacist from University Hospitals Birmingham NHS Foundation Trust England, will be discussing managing medicines. Come
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