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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.


Society for Mucopolysaccharide Diseases


Address

MPS House, Repton Place
White Lion Road
Amersham, Buckinghamshire HP7 9LP United Kingdom

Phone

0345 389 9901

Fax

0345 389 9902

Email Address

mps@mpssociety.co.uk

Description

The Society for Mucopolysaccharide Diseases is a voluntary, international organization in the United Kingdom dedicated to providing information, support, and advocacy services to individuals and families affected by mucopolysaccharide and related diseases. The society was founded in 1982 by a group of parents with children affected by MPS disorders. The mucopolysaccharide diseases (mucopolysaccharidoses) belong to a group of rare metabolic disorders known as lysosomal storage disorders. Lysosomes are particles bound in membranes within cells that break down fats and carbohydrates. The mucopolysaccharidoses are characterized by an abnormal occurrence of certain fatty substances (mucolipids) and/or complex carbohydrates (mucopolysaccharides) within cells of particular tissues of the body. The different forms of MPS disease, such as Hurler syndrome (MPS I), Hunter syndrome (MPS II) etc. are often characterized by multiple abnormalities of the skull and face, growth delays, mental retardation, and/or additional symptoms and findings that may vary in range and severity. In many of these disorders, life-threatening complications may result during childhood. The MPS Society is committed to promoting and supporting research to further the understanding and improve the treatment of MPS disorders, offering networking services to affected families, and providing practical assistance in areas of health, welfare, education, adaptations, and respite care. It has a help line, holds regular national and regional conferences, and provides a variety of educational materials.

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