We are an organization that advocates for children and young adults who have syndromes without a name. We offer support, advice and information on the challenges that families face when there is no diagnosis. We also advocate for changes in the medical community that will benefit undiagnosed individuals.

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.