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Glenn Nichols, surrounded by his hospice team. The author is in yellow.

Genetic Linkage

Tess's Tale: Social Media Catalyzes Rare Disease Diagnosis

September 17, 2015

Tags: rare diseases, Baylor College of Medicine, Tess Bigelow, Undiagnosed Diseases Network, NORD

Tess Bigelow
Attention to the plight of families with rare diseases continues to grow this week, providing a backdrop to another compelling tale of a family seeking a diagnosis for mysterious symptoms.

THE UNDIAGNOSED DISEASES NETWORK
The National Human Genome Research Institute’s Undiagnosed Diseases Network (UDN) just announced the UDN Gateway. This online application portal will guide patients to a growing national network of clinical sites, including six new ones and two genome sequencing centers. The Gateway replaces paper-based application to specific clinical centers for the few coveted slots. (more…)

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