Latest News
Date: 28 Jun, 2024 We are on the hunt for a Patient and Public Involvement and Engagement (PPIE) Coordinator Thank you for your interest in the PPIE Coordinator role at Alström Syndrome UK and Breaking Down Barriers. This exciting new role reflects our ambition to further develop the support we offer to individuals and families living with rare and
Grants for Holidays and Day Trips Now we are approaching summer and hopefully we get some sunny weather, you may be looking for things to do. We know how expensive summertime can be so we have put together some information below that may help. Please be aware that lots of these grant applications are only
Jai’s Dream Took Flight at Birmingham Airport! Work experience gives young people the opportunity to have a short-term placement with an employer, to work alongside people as they go about their daily tasks. It supports the development of young people’s skills, introduces them to new people and they can learn more about the world of
Join our Alström Chats Our Care Coordinator, Clair Pudaruth is bringing parents and carers of those affected by Alström Syndrome in the UK together, to share their experiences, insights and discover ways we can support one another. In these online informal chats, parents and carers can chat together about all things Alström and support one
Melissa joins the ASUK Team We have the fantastic news, that Melissa Crowland who many of you will know as one of our Trustees has now joined our ASUK team as our Wellbeing Coordinator. This will mean Melissa will now step-down from the Board of Trustees but will now have a more direct role supporting
LifeArc launches £40m research centres to hopefully unlock new tests and treatments for people living with rare diseases The aim of the 4 new LifeArc Translational Centres for Rare Diseases, is that people living with rare conditions will get access to improved tests and treatments. Bringing together leading rare disease scientists and specialists, these virtual