Latest News


Safe and Savvy Online

Date: 06 Feb, 2020  No Comments  ASUK USER

As part of Safer Internet Day 2020,  the charity Look UK have teamed up with the not-for-profit company Wise Kids to provide a free webinar for youngsters with a visual impairment and their parents, about keeping safe online. This will be happening on the 11th February 2020 at 8pm. If you would like to register


Northern Powerhouse, Sheffield Makes People Happy!

Date: 21 Jan, 2020  No Comments  ASUK USER

The Ticket Bank is for charities and community organisations that want to improve access to the arts, music events and cultural activities for their members who experience barriers to attending these events. Ticket Bank believe that all events should be accessible and socially inclusive and they provide free tickets to such events. They hope that


Groove to the Alstrom Stroove – Sneak Peek!

Date: 17 Jan, 2020  No Comments  ASUK USER

This film is a must see – bringing together clinicians, families and the ASUK team to Groove to the Alstrom Stroove! Alström Syndrome UK are always looking for fun and innovative ways to stay fit and healthy. Alström can often lead to obesity and type 2 diabetes so leading a healthy lifestyle is very important


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


National Conversation on Rare Diseases Survey

Date: 07 Nov, 2019  No Comments  ASUK USER

Do you want to help inform the rare disease framework as part of the UK Strategy for rare diseases in 2020? If you are a patient, healthcare professional or industry member, you can take part in the ‘National Conversation’ now! The Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood,


What a day and night!

Date: 28 Oct, 2019  No Comments  ASUK USER

Thank you to everyone who joined the Alstrom Community on the 19th October 2019 for the Alstrom Syndrome UK Past, Present and Future conference in Birmingham.  Whilst the families and professionals gathered at the conference, the youngsters had a fun-filled day at Drayton Manor Theme Park. The conference brought families together to map their diagnostic