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Date: 20 Sep, 2019 Welcome to your September edition, of News, Views and Useful Links. In this edition we have a full round up for you, including Amy jetting off to the Game of Thrones film sets in Ireland and discover how you can have your own adventure! and BE QUICK TO GET THIS DEAL ASUK conference is happening
European Reference Networks are a virtual network of specialists and healthcare providers across Europe who aim to share knowledge and information they hold about rare complex conditions. The hope is that this concentration of knowledge and information will improve the management and treatments for rare complex conditions. European Reference Networks (ERN) create a clear governance
As any Game of Thrones fan will know, Ireland is one of the backdrops for this TV fantasy drama which has gripped the world. One of our members, dreams was to visit the magical locations where the hit drama was filmed. Through the ASUK Big Activity Grant, ASUK were able to contribute to Amy’s trip
We are proud to announce that we are now a Charity Partner and an integral part of the Rare Revolution magazine, helping to bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community. We hope this will raise awareness of Alstrom Syndrome alongside other rare conditions and will
As the weather is hotting up, grab something chilled and take 5 minutes to read our latest newsletter. Filled with lots of stories from our members including travels to Barbados and America and how Birmingham Bobbies made dreams come true… Find out how you can get involved in planning your Family Event on the