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Latest News


Don’t send me a card!

Date: 11 Dec, 2024  No Comments  Alstrom Admin

Supporting ASUK at Christmas. With the cost of postage going through the roof and us all looking for ways to help and support one another over the festive period… Why not give a donation instead of sending Christmas cards this year… and bring joy to families and individuals affected by Alström Syndrome across the UK.

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Journey to Diagnosis Report – out now!

Date: 19 Aug, 2024  No Comments  Alstrom Admin

Journey to Diagnosis Report Let’s set the scene, the joy of having your first born turns to despair as you know something just isn’t quite right. They have an un-controllable hunger, they are gaining weight at a rapid rate and the wobbly eyes and shying away from the light, which you thought was normal for

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Summer Newsletter is Out Now!!

Date: 19 Aug, 2024  No Comments  Alstrom Admin

Here comes the ASUK Summer newsletter – full of uplifting family stories, and join us in celebrating 9 years of the Children in Need project, discover family grants available, read research updates and much , much more. You can download the pdf newsletter HERE or a plain text version HERE Don’t forget to book onto

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Grant Finder

Date: 11 Jun, 2024  No Comments  Alstrom Admin

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

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Dreams can come true!

Date: 21 May, 2024  No Comments  Alstrom Admin

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

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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

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