Latest News
Date: 14 Mar, 2025 Rare Disease Day takes place on the last day of February every year to raise awareness about rare diseases and their impact on patients lives. This year we launched the AS Community ‘Off the Record’ podcasts and our Chief Executive, Kerry Leeson-Beevers (pictured below on the right) headed off to Westminster! She also met up
Exciting Research Opportunity: Investigating Neuropathy and Ophthalmic Biomarkers in Alström Syndrome We are pleased to share an exciting opportunity to take part in a ground-breaking research study led by Professor Tarek Hiwot from Queen Elizabeth Hospital Birmingham and Professor Mitra Tavakoli from the University of Exeter. This study aims to better understand and assess pain and neuropathy in
All Ears Radio – Goes Live! Where every story finds a listener… All Ears Radio has been designed for visually impaired radio lovers! Our very own Abdullah is not only part of the All Ears Radio team but provides a fascinating ‘Hear Me Out’ podcast series for you to listen to in your own time.
Wising you all a lovely time over the festive period. Grab something warm to drink and take 5 minutes to read these uplifting family stories, updates from the conference and how to stay well over the winter period in our latest Winter newsletter. Please download your PDF version HERE or a plain text version HERE Please
We have a special treat for you… At the recent ASUK Conference, Aisha from the AS Culture Family Forum got us all in the Christmas spirit by singing Mariah Carey’s All I want for Christmas! …and here it is, just click on the link below so you can watch too… Wishing you all a very
Supporting ASUK at Christmas. With the cost of postage going through the roof and us all looking for ways to help and support one another over the festive period… Why not give a donation instead of sending Christmas cards this year… and bring joy to families and individuals affected by Alström Syndrome across the UK.