Patients with erythropoietic protoporphyria or X-linked protoporphyria have excruciating phototoxic attacks after sunlight exposure, and effective oral treatments have been elusive. New research findings are summarized in this short video. https://nej.md/40Y0LwI | The New England Journal of Medicine
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YouTubeChildren's Hospital Los Angeles
They Are Allergic To The Sun When Carissa goes outside it feels like acid is burning her skin. They suffer from erythropoietic protoporphyria (EPP), a rare inherited metabolic disorder which causes sensitivity to the sun. | seen.tv
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They Are Allergic To The Sun When Carissa goes outside it feels like a…
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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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