Syndromes Without A Name USA is a non-profit tax exempt organization that offers support, information and advice to families of children living with a syndrome without a name. They are often described in many different ways such as; undiagnosed syndrome, unknown diagnosis, mystery diagnosis.

We advocate for

• awareness/recognition by medical community, education system, social services, general public
• more dialogue within the medical community with respect to undiagnosed cases
• increased continuity of care among/between specialists and primary care physicians
• improving the diagnostic process by attempting to participate in/create a database in order to make diagnostic connections
• potentially new programs to protect children/families without a diagnosis from "falling through the cracks" and to allow them to access appropriate services

We provide support to

• address the lack of information families have without a diagnosis
• offer empathy/understanding/connections to other families
• motivate and empower parents/families to advocate for the best heathcare/services for their child
• we help to address psychosocial concerns such as feelings of isolation, guilt, helplessness, frustration, emotional distress, etc.

http://www.undiagnosed-usa.org/index.htm