Syndromes Without a Name USA (SWAN USA)
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[edit] Background
Syndromes Without a Name USA provides support, information and connections to families of children with undiagnosed medical disorders by promoting increased awareness, respect, and understanding. SWAN USA hopes to empower families to improve the quality of life for these children by enabling them to create safe environments and protect the welfare of those living with an undiagnosed disorder. The organization began with a simple email group and newsletter but is currently involved with initiatives to compile the data of undiagnosed children into a database searchable by multiple symptoms to be used by doctors. SWAN USA is located in Otsego, Michigan.
[edit] Website
www.undiagnosed-usa.org
[edit] Recommended Sites
[edit] Links to Other Organizations
* Advocacy Organizations * Academic Institutions * Biotech Companies * Government Agencies * Genetic Alliance * Laboratories * Law/Consulting Firm * Patient Registries * Policy Organizations/Think Tanks * Professional Societies * Other
