The Society is pleased to have published a range of information resources for individual members, their families, carers and professionals. As the Society is only a small charity with considerable commitments to both research programmes and advocacy support, whilst we seek to reach as wide a readership as possible, we simply cannot absorb the growing costs without charging a contribution towards printing and postage.
Here are just some of our materials but for further information please phone us or download a publication order form.
'Guides to Understanding ...' Booklets
Each booklet in the 'Guide to Understanding...' series introduces the disease, its causes and inheritance. A detailed clinical presentation with options for managing and treating specific symptoms is given with guidance on general management of issues including diet, drugs and physiotherapy. There are sections on living with a child or adult affected by the particular disease and a final section which covers specific treatments for the condition where they exist. The booklets are produced by the MPS Society drawing on the knowledge and experience of parents and doctors with reference to medical literature.
Progression Booklets
These booklets are produced specifically for professionals working with children and adults affected by an MPS or Related Disease. Through photographs of the same child at different ages, the booklets demonstrate the progressive nature of each disease.
Children's Booklets
Written for children with an MPS or Related Disease, or their siblings, these booklets are designed for children aged 5 years and over. Each colourful booklet uses large print to give age appropriate information about the disease and its effects. They are an invaluable tool for use in schools to support children in understanding more about these diseases.
Guide to Understanding... Fact Sheets
The Society has produced a number of factsheets on some of the MPS and Related Diseases.
Fabry Disease
Sly Disease
Winchester Syndrome
Multiple Sulfatase Deficiency
Mucolipidosis IV
Aspartylglycosaminuria (AGU)
Fact Sheets
We are developing a range of fact sheets to extend the support we offer to the wider family.
For Grandparents
Copyright
In order to protect both the Society and our members our publications are registered for copyright. The Society will not consent to the translation, lending or copying of any of its publications in whole or in part without our prior written agreement.
