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Date: 28 Feb, 2019 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
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
#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
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