Undiagnosed Children’s Day: SWAN USA & Global Genes Celebrates with Video and Toolkit


This past Friday was “Undiagnosed Children’s Day,” celebrating the hope to find answers for those living with syndromes without a name. SWAN USA created the following video to put a face to the cause. The organization is working alongside Global Genes to help families find answers through whole genome sequencing in our Undiagnosed Patient Program.

Syndromes Without A Name USA (SWAN USA) is an 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

Global Genes also released a new toolkit for Undiagnosed Day titled, “Becoming an Empowered Patient: A Toolkit for the Undiagnosed.” The goal of this toolkit is to move patients away from the feeling of being afraid and anxious and towards a feeling of empowerment through preparation, confidence, and education. The toolkit will help patients understand how to approach and manage the next steps in their healthcare journey.

The toolkit features multiple sections including how to organize your medical records, how to prepare for doctor’s appointments, and how to become your own research advocate, while giving resources and perspectives from other patients.

View the entire toolkit at the link below:

Becoming an Empowered Patient: A Toolkit for the Undiagnosed.

 

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