Latest News


ASUK Big Activity Challenge

Date: 07 Jun, 2018  No Comments  ASUK USER

What is the Big Activity Challenge? ASUK are now offering adults (18’s and over) with Alström Syndrome, the chance to try a new activity. You can apply for between £50-£500 to pay for the activity, all we ask you do is provide some photographs and write an article for publication in the ASUK newsletter (within


A quiz show STAR!

Date: 31 May, 2018  No Comments  ASUK USER

A quiz show star! Well done Ellie on your SUPERB performance on the BBC show Hardball! Click HERE to view the show in full!


Direct Payments

Date: 31 May, 2018  No Comments  ASUK USER

Looking for more choice & control over how your care & support is arranged? Then you need to opt for Direct Payments. Direct payments give you more flexibility over how your care and support is arranged and provided. If, after a care needs assessment, your council decides you need support, you will receive a personal budget. You


SEND Inquiry – Have your say!

Date: 24 May, 2018  No Comments  ASUK USER

SEND – A New Inquiry The Government Education Committee has launched an inquiry into support for children and young people with Special Educational Needs and Disabilities (SEND). What is the SEND System? In 2014, the Government introduced changes to the SEND system, with the intention of offering simpler, improved and consistent help for children and


National Genomics Board

Date: 14 May, 2018  No Comments  ASUK USER

A new Genomic Medicine Service is in the process of being established to provide a more consistent and equitable genetic testing service to people living throughout England. Its Board brings together senior decision makers across the sector, including key civil servants, delivery partners, patient advocates and representatives from research organisations and industry. The purpose of the Board


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