MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
MPS I Scheie disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
MPS IVA Morquio disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
MPS VI Maroteaux-Lamy disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
MPS VII Sly disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
Impact Report 2020/21
As part of moving our resources online, we are starting to upload our magazines. Below is the issue from 2020/21. Please click to download.
MPS I Hurler-Scheie disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
MPS I Hurler disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
MPS II Hunter disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
Understanding Fabry disease - information for parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
Understanding MPS II Hunter disease
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
Understanding MPS I Hurler, Hurler-Scheie and Scheie disease
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
Understanding Fabry disease
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
Simply Sensory Christmas videos
Helen and Julie at Simply Sensory Training have very kindly put together some sensory Christmas video clips for you to do with your...
Mental health and wellbeing videos for children - anxiety and children
These videos were developed following a series of anxiety workshops for children. The videos invite children to manage their anxiety as...
Mental health and wellbeing videos for teens - dealing with anxiety
These videos were developed following a series of anxiety workshops for young people. The videos invite our members to manage their...
Top tips to combat loneliness
We know that living with MPS, Fabry or a related disease can feel daunting and you may feel lonely and isolated. We all feel lonely from...
Fabry Findings - Issue No. 5 - Autumn 2021
Findings from research conducted with the Fabry community by Rare Disease Research Partners on behalf of the Fabry International Network.
Will changes to NICE processes work for rare diseases?
NICE is asking for feedback on the methods and processes they use to decide which rare disease treatments they fund.