Syndromes Without a Name - SWAN USA
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.