Latest News


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


Happy Rare Disease Day 2019!

Date: 28 Feb, 2019  No Comments  ASUK USER

  Rare Disease Day falls on the last day of February – this year it will be on the 28th February 2019. This will be the twelfth international Rare Disease Day coordinated by EURORDIS. On this day patient organisations all over the world will hold awareness-raising activities. The theme for Rare Disease Day 2019 is ‘Bridging


Watch LIVE – Rare Disease Event at United Nations

Date: 21 Feb, 2019  No Comments  ASUK USER

A Rare Disease Day policy event will take place at the United Nations on the 21st February 2019, 14:45 pm (GMT). Over 30 speakers from around the world, including ambassadors and officials from the Permanent Missions to the UN of Brazil, Estonia, Japan, Kuwait, Thailand, and the United Arab Emirates, will discuss how to advance


In case you missed our Annual General Meeting…

Date: 08 Feb, 2019  No Comments  ASUK USER

Our Annual General Meeting took place on the 24th January 2019. This year we decided to do this by webinar/tele-conference to be as accessible as possible to allow as many people to have the opportunity to attend, particularly as we are all spread out throughout the UK. In case you missed this years AGM, we


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