Syndromes Without A Name – USA (SWAN) is a nonprofit tax exempt 501c3 organization that advocates for children and young adults who have syndromes without a name.
SWAN-USA offers support, advice and information on the challenges that families face when there is no diagnosis. SWAN-USA also advocates for change in the medical community that will benefit undiagnosed individuals.
SWAN-USA advocates 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
SWAN-USA provides 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
- help to address psychosocial concerns such as feelings of isolation, guilt, helplessness, frustration, emotional distress, etc.