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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
Be Quick, Apply to join our Breaking Down Barriers project today!
Date: 22 Jan, 2019
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Applications for Breaking Down Barriers Now Open Would you like to join Breaking Down Barriers? The first two years of the Breaking Down Barriers project has been a huge success! Each organisation taking part has received funding to deliver some fantastic individual projects and develop the services they provide to their members. As a result,
The ASUK Annual Review Summary is now published! This summary captures our activities from the last financial year. We hope you agree that this gives a snapshot of how we have provided support as well as the daily achievements of many families and people living with Alström. Click below for access: ASUK Annual Review 2017-2018
ASUK along with 800 other rare disease organisations, patients and advocates attended the Global Genes Summit in California between 3-4th September this year. Global Genes was founded in 2008 with the goal of helping families affected by rare disease connect with tools, resources, and much needed support, helping eliminate the challenges of rare disease. The