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News, Views and Useful Links…April 2019 edition

Date: 03 May, 2019  No Comments  ASUK USER

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.


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


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


Fizz Free February!

Date: 01 Feb, 2019  No Comments  ASUK USER

Go on pledge today and swop that pop, save money and stay healthy #GoFizzFree #FizzFreeFeb Fizz Free February has got off to a great start, with politicians, celebrities, schools and councils all pledging to give up fizzy drinks. Southwark Council started a campaign in 2018 to encourage their local area to give up fizzy drinks