Latest News


Fundraising for ASUK!

Date: 12 Apr, 2018  No Comments  ASUK USER

A HUGE thank you to David Lunt who will be taking part in the London Marathon on 22nd April to help raise funds for a number of charities one of which is Alström Syndrome UK! We will let you know later this month how he gets on! Good luck David!  Please visit our donation page


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


Rare Disease Implementation Plan Launched Today!

Date: 29 Jan, 2018  No Comments  ASUK USER

We are pleased to announce that The Department of Health and Social Care and NHS England have published plans to implement the UK Strategy for Rare Diseases.  You can view these plans HERE This is the implementation of the 51 commitments of the strategy for Rare Diseases in England. You can find out more about


Rare Disease Day 2018

Date: 18 Jan, 2018  No Comments  ASUK USER

Rare but Stronger Together, Celebrating Rare Disease Day! What is Rare Disease Day? Rare Disease Day takes place on the last day of February each year.  To raise awareness of rare diseases amongst the health and research professionals, policy makers and anyone who has an interest in rare diseases. Building awareness of rare diseases is vital because 1


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