Beforehand, Crowley and her father, John, will meet with Trump in the Oval Office to discuss rare disease treatments. article continues after advertisementThe timing is fortuitous: The visit and Trump's address come on Rare Disease Day. Megan Crowley, a college student who was diagnosed with Pompe disease at 15 months old, will be seated alongside first lady Melania Trump during the address. "Megan and our family will meet privately in the Oval Office with the President to discuss the needs of people living with rare diseases, and especially advancing medicines for treatments and cures for ALL rare diseases," John F. Crowley wrote in a Facebook post. WASHINGTON — A young woman whose father founded a biotechnology company in pursuit of a treatment for her rare disease will be front and center on Tuesday night for President Trump's address to a joint session of Congress.
Living with a rare disease known as "Stiff Person Syndrome"
As it turns out, Ward's symptoms were caused by SPS - a rare disease that strikes 1 in 1 million people. Governor Walker proclaimed February 28th as "Rare Disease and Disorder Day." And some rare diseases are life-threatening mysteries with no known cure. "It calms down the immune system, so that you're not attacking yourself so much," Dr. Carlson said. Autoimmune diseases like "Stiff Person Syndrome" are rarely heard of, but hold heavy impacts to those who have it.collected by :Lucy William
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