Rare Diseases

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

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

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