#RareDisease


News, Views and Useful Links… March 2019 edition

Date: 15 Apr, 2019  No Comments  ASUK USER

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.


My Guide Dog and Me…

Date: 12 Apr, 2019  No Comments  ASUK USER

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


Travelling Blind; Where will your adventure take you?

Date: 08 Mar, 2019  No Comments  ASUK USER

  On 7th March 2019 BBC Two aired a travelling show with a difference, Travelling Blind. This featured Amar Latif, founder of Travel Eyes and comedian Sara Pascoe as they embark on an adventure across Turkey. This is a truly beautifully filmed programme, which takes you on the adventure with them. Reminding us, to use


ASUK speaks up for Patients in Clinical Trial Design Study

Date: 08 Feb, 2019  No Comments  ASUK USER

#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