News, Views and Useful Links, September edition, out now!

Date: 20 Sep, 2019  No Comments  ASUK USER

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

What are European Reference Networks?

Date: 17 Sep, 2019  No Comments  ASUK USER

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

Game of Thrones trip of a lifetime!

Date: 16 Sep, 2019  No Comments  ASUK USER

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

Save the Date! 19th October 2019

Date: 15 Aug, 2019  No Comments  ASUK USER

ASUK is very excited to announce that the next ASUK family gathering will take place in Birmingham on Saturday 19th October 2019.  ASUK are planning a family event to bring us all together; for a day full of information and updates, accessible product demonstrations and interactive workshops.  This will be followed in the evening by time to reconnect

We’ve joined the Rare Revolution!

Date: 30 Jul, 2019  No Comments  ASUK USER

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

Would YOU Give a Coffee to ASUK!

Date: 09 Jul, 2019  No Comments  ASUK USER