Latest News


Join our Alström Chats

Date: 21 May, 2024  No Comments  Alstrom Admin

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


Wellbeing Team gets a Boost!

Date: 26 Apr, 2024  No Comments  Alstrom Admin

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


Rare Disease Centres get the green light!

Date: 24 Apr, 2024  No Comments  Alstrom Admin

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


Winter newsletter out now!

Date: 20 Dec, 2023  No Comments  Alstrom Admin

Wising you all a lovely time over the festive period Grab something warm to drink and take 5 minutes to read these uplifting family stories in our latest Winter newsletter. Please download your PDF version HERE   Please get in touch with Catherine Lewis if you would like an article to be included in our


Join us for the AGM

Date: 03 Oct, 2023  No Comments  Alstrom Admin

Invitation to the ASUK Annual General Meeting       You are invited! Alström Syndrome UK are pleased to announce our Annual General Meeting will take place virtually on Wednesday 22nd November 2023 from 7-8pm (GMT, UK time). The Board of Trustees and Chief Executive will all be in attendance. At the AGM we will celebrate


Invitation to Inaugural Lecture: Alstrom Past, Present and Future

Date: 13 Apr, 2023  No Comments  Alstrom Admin

In celebration of Alström Syndrome UK turning 25, AS Global is pleased to announce the world’s first annual lecture all about Alström Syndrome. Alström Syndrome Past, Present and Future. You are invited to this, the first inaugural Lecture all about Alström Syndrome. This free virtual lecture will investigate the history of Alström Syndrome, what progress