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Hunter Syndrome usually first manifests itself in infancy or early childhood (between 18-36 months). Children first present with common childhood sicknesses like ear infections and colds. As the disease progresses, children begin to show the major signs and symptoms of the disease which include:
National MPS Society
This organization was founded by families of children with mucopolysaccharidoses and mucolipidoses. They provide information and support, such as regional meetings in which families can meet each other.
The Canadian Society for MPS and related diseases
Organization whose purpose is to provide information and support to individuals and their families afflicted with a Mucopolysaccharide (MPS) disease, increase public awareness of MPS diseases, and raise funds to further research into MPS and related diseases.
Transkaryotic Therapies, Inc.
Pharmacuetical company that currently is researching a new enzyme replacement therapy. Some patients have benefited form this therapy.
Lysosomal Storage Disease Network
Great website the provides information, resources, and services to physicians and patients alike in their efforts to cope with Hunter Syndrome.
CLIMB (Children Living with Inherited Metabolic Diseases)
UK Organization dedicated to fighting metabolic diseases through research, awareness and support. This organization provides advice, information and support on all metabolic diseases to children, young adults, and families.