Latest News


Roll up, Roll up!

Date: 04 Oct, 2019  No Comments  ASUK USER

Get your raffle tickets here! On the 19th October 2019 ASUK will be holding the event of the year, the ASUK conference and evening celebrations which includes a big bonanza raffle! The raffle will be drawn at the evening celebration after the conference. This will help ASUK to raise funds for the vital services we


Invitation to the ASUK Annual General Meeting

Date: 03 Oct, 2019  No Comments  ASUK USER

You are invited! Alström Syndrome UK are pleased to announce our Annual General Meeting will take place on Saturday 2nd November 2019 from 2:00 – 3:00 pm via teleconference. The Board of Trustees and Chief Executive will all be in attendance. At the AGM we will celebrate the achievements of the organisation and family members over


Research opportunity – have your voice heard

Date: 25 Sep, 2019  No Comments  ASUK USER

COordiNated Care Of Rare Diseases (CONCORD) is a research study which aims to investigate how services are currently coordinated for rare conditions and how they should be coordinated in the future. The study is funded by the National Institute for Health Research and is being led by researchers at University College London, in collaboration with Genetic Alliance UK and others.


News, Views and Useful Links, September edition, out now!

Date: 20 Sep, 2019  No Comments  ASUK USER

Welcome to your September edition, of News, Views and Useful Links. In this edition we have a full round up for you, including Amy jetting off to the Game of Thrones film sets in Ireland and discover how you can have your own adventure! and BE QUICK TO GET THIS DEAL ASUK conference is happening


What are European Reference Networks?

Date: 17 Sep, 2019  No Comments  ASUK USER

European Reference Networks are a virtual network of specialists and healthcare providers across Europe who aim to share knowledge and information they hold about rare complex conditions. The hope is that this concentration of knowledge and information will improve the management and treatments for rare complex conditions. European Reference Networks (ERN) create a clear governance


Game of Thrones trip of a lifetime!

Date: 16 Sep, 2019  No Comments  ASUK USER

As any  Game of Thrones fan will know, Ireland is one of the backdrops for this TV fantasy drama which has gripped the world. One of our members, dreams was to visit the magical locations where the hit drama was filmed.  Through the ASUK Big Activity Grant, ASUK were able to contribute to Amy’s trip