#RareDisease


Time to Talk – Organ Donation

Date: 09 Sep, 2020  No Comments  Alstrom Admin

To coincide with Organ Donation Week from the 7th – 13th September 2020,  we would like to shine a spotlight on Organ Donation – looking at the right information to help you make the right choices for you and your family. Sifting through the myths and getting to the facts of the matter. The NHS


Hammer Down!

Date: 24 Mar, 2020  No Comments  ASUK USER

Hammer Down Hassan When you are thinking of staying at home for many weeks, it can be a daunting prospect but why not check out this uplifting film. Let’s look for ways we can keep ourselves active and healthy. Share your ideas with us and we will bring together ideas and information to keep us


Active Lifestyle Winner!

Date: 13 Mar, 2020  No Comments  ASUK USER

Active Bradford is a partnership of organisations committed to making Bradford a healthier and more prosperous place to live and work. Each year Active Bradford host an awards ceremony where they recognise those people and organisations who go above and beyond in their local area to help other people get active or through their own


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