Latest News


ASUK speaks up for Patients in Clinical Trial Design Study

Date: 08 Feb, 2019  No Comments  ASUK USER

#TimeforChange Kerry Leeson-Beevers, National Development Manager for ASUK, along with ten other patient representatives, who are all members of the Patient Think Tank (PTT) of a European research consortium for methodology of rare disease trials called ASTERIX, were interviewed to discuss their views on clinical trial design and the challenges faced for rare diseases. This


ASUK Annual Review Summary

Date: 22 Dec, 2018  No Comments  ASUK USER

The ASUK Annual Review Summary is now published! This summary captures our activities from the last financial year. We hope you agree that this gives a snapshot of how we have provided support as well as the daily achievements of many families and people living with Alström. Click below for access: ASUK Annual Review 2017-2018


A huge THANK YOU to Children in Need!

Date: 01 Aug, 2018  No Comments  ASUK USER

A huge THANK YOU to Children in Need! ASUK are committed to improving services for our young people and their families. In 2015, we were lucky enough to receive 3 years funding from Children in Need to provide support to young people to support them through transition from clinics at Birmingham Children’s Hospital to the


Thank you Wickersley Cricket Club!

Date: 18 Jul, 2018  No Comments  ASUK USER

Alström Syndrome UK would like to extend our thanks to Wickersley Cricket Club!  Yet again members of the club have very kindly donated £1,916.66 to Alström Syndrome UK following a successful fundraising event. 17 year old Kion (pictured left), who is affected by Alström Syndrome accepted the donation earlier this month. We are all very


ASUK Big Activity Challenge

Date: 07 Jun, 2018  No Comments  ASUK USER

What is the Big Activity Challenge? ASUK are now offering adults (18’s and over) with Alström Syndrome, the chance to try a new activity. You can apply for between £50-£500 to pay for the activity, all we ask you do is provide some photographs and write an article for publication in the ASUK newsletter (within


A quiz show STAR!

Date: 31 May, 2018  No Comments  ASUK USER

A quiz show star! Well done Ellie on your SUPERB performance on the BBC show Hardball! Click HERE to view the show in full!