#RareDisease


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


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


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


Accessible Travel Lounge Opens!

Date: 11 Jun, 2019  No Comments  ASUK USER

Rail passengers using Birmingham New Street Station can now use a new assisted travel lounge which opened on the 10th June 2019. The lounge was provided by Network Rail as part of their ‘Railway Upgrade Plan’ and was designed with the guidance of Birmingham New Street’s accessibility forum, which includes people with disabilities, their carers