Don’t worry if you missed the AGM Alström Syndrome UK held their Annual General Meeting on Saturday 2nd November 2019 from 2:00 – 3:00 pm which took place via teleconference to enable as many people as possible to listen to our updates. The AGM celebrated the achievements of the organisation and family members over the last year.
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.
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
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
We are proud to announce that we are now a Charity Partner and an integral part of the Rare Revolution magazine, helping to bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community. We hope this will raise awareness of Alstrom Syndrome alongside other rare conditions and will