Growing Up ‘Allergic to the Sun’ - Erythropoietic Protoporphyria
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Growing Up ‘Allergic to the Sun’ - Erythropoietic Protoporphyria
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YouTubeChildren's Hospital Los Angeles
Understanding erythropoietic protoporphyria
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Understanding erythropoietic protoporphyria
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Understanding erythropoietic protoporphyria
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Kris Kinar lived with Erythropoietic protoporphyria (EPP), a rare sun-sensitivity disorder causing immediate severe pain upon sun exposure, for decades undiagnosed in sunny Saskatoon. Forced to remain indoors, he sought rare disease organizations, leading him to a clinical trial at Massachusetts General Brigham. There, he met Dr. Amy Yeung, an attending physician at Massachusetts General Hospital and Harvard Medical School assistant professor who also has EPP. The trial drug, Bitopertin, decreas
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