Alstrom


Hot off the press!! – the Winter newsletter is out NOW!

Date: 13 Dec, 2019  No Comments  ASUK USER

With the cold and wintery nights setting in why not grab something warm and comforting and take 5 minutes to read our latest newsletter. This edition is full to the brim with family stories and adventures – including a Game of Thrones adventure in Ireland and one of our members relaxing in the Highlands. You


News, Views and Useful Links, September edition, out now!

Date: 20 Sep, 2019  No Comments  ASUK USER

Welcome to your September edition, of News, Views and Useful Links. In this edition we have a full round up for you, including Amy jetting off to the Game of Thrones film sets in Ireland and discover how you can have your own adventure! and BE QUICK TO GET THIS DEAL ASUK conference is happening


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