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Fabry Support and Information Group: Fabry Disease
Organization whose mission is to raise awareness of Fabry disease and its symptoms. The FSIG website provides mutual self-help by linking patients and family members/caregivers so that they can support and encourage one another.
A great site with detailed information about the disease, treatment options, support groups, and ongoing clinical research. F
The Fabry Registry is an ongoing, observational database that tracks natural history and outcomes of patients with Fabry disease. Participation is open to all physicians managing patients with Fabry disease. The purpose of this website is to collect clinical data about Fabry disease management in order to find the best therapies for this disease.
Lysosomal Storage Disease Network
Great website the provides information, resources, and services to physicians and patients alike in their efforts to cope with aspartylglycosaminuria.
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.