Rare Diseases


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


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