Alstrom


We’ve joined the Rare Revolution!

Date: 30 Jul, 2019  No Comments  ASUK USER

We are proud to announce that we are now a Charity Partner and an integral part of the Rare Revolution magazine, helping to bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community.  We hope this will raise awareness of Alstrom Syndrome alongside other rare conditions and will


Be a Rare Champion!

Date: 01 Jul, 2019  No Comments  ASUK USER

Can you remember when we gathered together on our bikes to ride from Torquay to Birmingham, an amazing 200 miles to raise money and awareness of Alstrom Syndrome or when Nichola Martland along with her friends and family persuaded her friend to be waxed!! Eeekkk!! We rely on your continued generosity and support to continue


GAAD – Go Mouseless!!

Date: 16 May, 2019  No Comments  ASUK USER

16th May 2019 Today marks the eighth Global Accessibility Awareness Day #GAAD. The day aims to get everyone talking, thinking and learning about how to make digital technology accessible and inclusive for all people affected by different disabilities. Having accessible technology on our websites, mobile phones and web services such as Twitter and Facebook is


In case you missed our Annual General Meeting…

Date: 08 Feb, 2019  No Comments  ASUK USER

Our Annual General Meeting took place on the 24th January 2019. This year we decided to do this by webinar/tele-conference to be as accessible as possible to allow as many people to have the opportunity to attend, particularly as we are all spread out throughout the UK. In case you missed this years AGM, we


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


Bowled over by this donation!

Date: 15 Feb, 2018  No Comments  ASUK USER

A HUGE THANK YOU to Wickersley Cricket Club! Members of Wickersley Old Village Cricket Club kindly donated £1,700 to Alström Syndrome UK following a successful summer fundraising event. 16 year old Kion, who is affected by Alström Syndrome and whose family are members of the club gratefully accepted the donation. The funding will go towards a fun-filled activity