#AlstromSyndrome


Rare Disease Day 2020

Date: 19 Feb, 2020  No Comments  ASUK USER

On the last day of February every year the rare disease community comes together to raise awareness of rare diseases and their impact. This year is particularly special as Rare Disease Day falls on a leap year so it is even more rare falling on the 29th February 2020. The key message this year is that:


Make a Difference, Vote Today!

Date: 10 Feb, 2020  No Comments  ASUK USER

In the world of rare diseases, awareness no matter how big or small makes a HUGE difference. Rare Disease UK held the 1st Rare Film Festival to raise awareness of Rare Diseases on the 10th February 2020.  Over 50 films were submitted to take part in the event and the film ‘Living with Alstrom Syndrome’ was chosen as


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