Whether you’re directly affected by Aicardi-Goutières syndrome, are interested to know more about the condition or would like to help raise awareness and vital funds; we’re here to support you, inform you and reassure that you are not alone.
Welcome to the UK’s patient organisation for AGS, welcome to our network
what is Aicardi-Goutières syndrome in medical terms
stories of our children and what family life is like
other charities, sites and helpful information
order your official clothing from Amazon
Why join our network?
The AGS network was created as a patient organisation in 2020 by a group of parents directly affected by the syndrome. We want to ensure that families feel supported and are armed with the knowledge and information they need to secure the correct resources to help their children thrive. We need to continue to be ‘trial ready’ in order to remain attractive to pharmaceutical companies and encourage them to invest into research. These companies want to see a network of patients and their families available to communicate with along with a circle of scientific professionals.
We have the professionals and they are eager to help; now all we need is you…