#AlstromSyndrome
Date: 03 May, 2019 Welcome to your April edition of News, View and Useful Links. In this edition we have included information about lots of fun activities. Whether your ideal trip is a theatre trip to see an audio described version of Les Miserables, sailing the high seas or a fun family day – there is something for everyone.
In this latest edition, read how one of our members literally ‘Reached for the Skies’ and how you can make your own adventure a reality… Also, what did we get up to on Rare Disease Day, great fun was had by all! Click here to view our latest e-newsletter.
Have you ever wondered what having a guide dog is really like, how are you assessed and what training is involved? Meet Kion and Curtis, they have both passed their guide dog assessment and are now on the waiting list to have their first guide dog… Following their assessment, they were both invited to Shireview Guide
#TimeforChange Kerry Leeson-Beevers, National Development Manager for ASUK, along with ten other patient representatives, who are all members of the Patient Think Tank (PTT) of a European research consortium for methodology of rare disease trials called ASTERIX, were interviewed to discuss their views on clinical trial design and the challenges faced for rare diseases. This