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Rare Disease Advocate Megan Crowley Gets Private Meeting With Trump

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On Tuesday, Megan Crowley, a college sophomore with Pompe disease, will meet with President Donald Trump in a private meeting to discuss the needs of those living with rare diseases. The meeting, which happens to take place on February 28, Rare Disease Day, precedes Trump’s address to the joint session of Congress, to which Crowley will be attending as a guest of the President and First Lady.

“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, wrote in a Facebook post announcing the meeting.

The Crowley family have been a part of the rare disease community for more than a decade. After Megan and her brother were diagnosed with Pompe disease, their father founded a bioengineering company with the hopes of treating the condition.

According to Stat, the Crowley patriarch still works in biopharmaceuticals and is being floated as a potential Republican candidate for New Jersey’s next U.S. Senate race.

Trump photo credit: Michael Vadon

Originally published: March 1, 2017
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