Syndromes Without A Name (SWAN)

SWAN is a nonprofit tax exempt 501c3 organization that advocates for children and young adults who have syndromes without a name. They offer support, advice and information on the challenges that families face when there is no diagnosis. SWAN also advocates for changes in the medical community that will benefit undiagnosed individuals.

The SWAN Purpose

SWAN advocates for...

• Awareness and recognition by the medical community, educational system, social services, and the general public.
• More dialogue within the medical community with respect to undiagnosed cases.
• Increased continuity of care among and 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 provides support to...

• Address the lack of information families have without a diagnosis.
• Offer empathy, understanding and connections to other families.
• Motivate and empower parents and families to advocate for the best heathcare and services for their child.

SWAN helps to address psychosocial concerns such as feelings of isolation, guilt, helplessness, frustration, emotional distress, etc.

Localización

1745 Lorna Ln
Otsego, 49078, MI

Ubicación accesible: No

Detalles

Tipo de organización	Sin fines de lucro (501c3)
Categorías	Advocacy, Disability Specific, Emotional Support, Social Media, Other
¿Se ofrecen servicios en Español?	No
¿Tienen boletín informativo?	yes
¿Cuidado de niños disponible?	No
Rango de edad	Todas las edades
Categorías de discapacidad	Medical Condition
¿Esta organización incluye todas las discapacidades?	No
Esta organización incluye estos diagnósticos específicos
¿Es este un servicio estatal?	yes
Sitio Web	http://www.undiagnosed-usa.org
Nombre de la persona de contacto
Correo electrónico	[email protected]
Número de teléfono	888-880-7926

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