Junior Member
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Join Date: Nov 2006
Location: New Jersey
Posts: 10
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Junior Member
Join Date: Nov 2006
Location: New Jersey
Posts: 10
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Consider checking with the "Syndromes Without A Name" (SWAN) mutual support network.
Google their name for their website.
They provide mutual support and information for parents of children with an undiagnosed or unnamed condition. They do this through an E-list discussion group for the parents to share information and provide each other with support.
- Ed at the American Self-Help Group Cleatinghouse
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