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Date: 10 Feb, 2020 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
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
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
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
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
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,