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Donald Trump Acknowledges Rare Disease Day in Joint Address to Congress

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On Tuesday, in his joint address to Congress, Donald Trump highlighted Rare Disease Day. ”An incredible young woman is with us this evening who should serve as an inspiration to us all,” Trump said introducing Megan Crowley, a college sophomore with Pompe disease. “Today is Rare Disease Day, and joining us in the gallery is a rare disease survivor.”

Trump went on to tell Crowley’s story – her diagnosis at 15 months old and her father’s founding of a bioengineering firm that helped develop a treatment for the disease.

Prior to his speech, Trump met with Crowley and her father to discuss the needs of those living with rare diseases. “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,” Crowley’s father, John Crowley, announced in a Facebook post Tuesday morning.

“Megan’s story is about the unbounded power of a father’s love for a daughter,” Trump said in his address, using Crowley’s story to touch on the approval process for orphan drugs. “But our slow and burdensome approval process at the Food and Drug Administration keeps too many advances, like the one that saved Megan’s life, from reaching those in need. If we slash the restraints, not just at the FDA but across our government, then we will be blessed with far more miracles like Megan.”

Originally published: March 1, 2017
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