Latest News


Game of Thrones trip of a lifetime!

Date: 16 Sep, 2019  No Comments  ASUK USER

As any  Game of Thrones fan will know, Ireland is one of the backdrops for this TV fantasy drama which has gripped the world. One of our members, dreams was to visit the magical locations where the hit drama was filmed.  Through the ASUK Big Activity Grant, ASUK were able to contribute to Amy’s trip


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


Would YOU Give a Coffee to ASUK!

Date: 09 Jul, 2019  No Comments  ASUK USER


Hot off the Press! – Summer Newsletter Out NOW!

Date: 05 Jul, 2019  No Comments  ASUK USER

  As the weather is hotting up, grab something chilled and take 5 minutes to read our latest newsletter. Filled with lots of stories from our members including travels to Barbados and America and how Birmingham Bobbies made dreams come true… Find out how you can get involved in planning your Family Event on the


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


YOU have the Power to Make a Difference in just 15 minutes!

Date: 13 Jun, 2019  No Comments  ASUK USER

YOUR data is critical in the fight to make a real difference to the lives of all those affected by Alström Syndrome (AS) YOU have the power to improve lives for the better by simply providing us with answers to some of the questions we have about infant health. ASUK have created an infant questionnaire