Alstrom


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


Tribute to true Champion, Christine Lavery MBE

Date: 02 Jan, 2018  No Comments  ASUK Author

We were saddened to hear that Mrs Christine Lavery, MBE and Chief Executive of the Society for Mucopolysaccharide Diseases (MPS Society) sadly passed away on the 19th December 2017, following a short illness. Christine started the MPS Society with her Husband in the early 1980’s and she has been truly dedicated to making a difference


It’s Christmas – let’s Read, Watch and Make Snow!

Date: 20 Dec, 2017  No Comments  ASUK Author

Over the festive period why not take the time to grab something warm and comforting and have a read of our latest winter newsletter, full of updates and family stories click HERE to view You can also click HERE to watch these truly insightful videos from parents, Clinicians and people affected by Alström Syndrome. Where