Rare
Date: 20 Sep, 2019 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
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.
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
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
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
#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