New Rare Disease Patient Video Series
July 18, 2016
Hear rare disease patients and their families share their stories in the new NCATS video series. The series aims to raise awareness of the importance of collaborative research. It features an interview with Dr. Petra Kaufmann, Director of the Office of Rare Diseases Research and Division of Clinical Innovation at NCATS, as well as with patients and families who know what it's like to live with the rare diseases MED23 gene defect, generalized lipodystrophy, relapsing polychondritis, Vici syndrome, hereditary hemorrhagic telangiectasia, epidermolysis bullosa, Phelan-McDermid syndrome, phenylketonuria, mitochondrial disease complex 3 with MELAS syndrome, and glutathione synthetase disorder.
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The Genetic and Rare Diseases (GARD) Information Center is a program of theNational Center for Advancing Translational Sciences and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). The GARD Information Center provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
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