Rare


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


Be Quick, Apply to join our Breaking Down Barriers project today!

Date: 22 Jan, 2019  No Comments  ASUK USER

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,


Bowled over by this donation!

Date: 15 Feb, 2018  No Comments  ASUK USER

A HUGE THANK YOU to Wickersley Cricket Club! Members of Wickersley Old Village Cricket Club kindly donated £1,700 to Alström Syndrome UK following a successful summer fundraising event. 16 year old Kion, who is affected by Alström Syndrome and whose family are members of the club gratefully accepted the donation. The funding will go towards a fun-filled activity


News, Views and Useful Links (February edition)

Date: 09 Feb, 2018  No Comments  ASUK USER

News, Views and Useful Links! Reaching for the Sky! One of our members Simmie who is always looking for a new challenge, shares her thoughts on her new love for trampolining, proving it is what you can do that counts. “I have recently started going to a trampoline park which opened in Birmingham not long


Easy Fundraising – whilst you shop!

Date: 09 Jan, 2018  No Comments  ASUK Author

Did you know that you can support Alström Syndrome UK by shopping online? Every time you shop online via easyfundraising at one of the 3,300 retailers including John Lewis, Aviva, Sainsbury’s and Booking.com, a donation will be made to Alström Syndrome UK, and it won’t cost you a penny extra. It’s really simple to get