Latest News

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

Join our Team

Date: 12 Feb, 2018  No Comments  ASUK USER

Project Outreach Officer – apply today! Would you like to contribute to the development of supportive and inclusive services for individuals and families affected by genetic disorders and support patients to have a voice? The aim of the Breaking Down Barriers project is to strengthen the ability of patient organisations and support groups to develop

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

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 in 20 people will live with a rare

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, a donation will be made to Alström Syndrome UK, and it won’t cost you a penny extra. It’s really simple to get