Danbury nonprofit seeks to bring new attention to curing rare diseases

By Phil Hall

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A Danbury-based nonprofit is launching a year-long awareness campaign to call public attention to rare diseases.

The National Organization for Rare Disorders (NORD) used Tuesday’s observance of Rare Disease Day to premiere “Do Your Share for Rare,” which will highlight the stories of individuals struggling with little-known diseases that do not yet have a treatment. The campaign will also highlight DoYourShare.com, an online community for those living with these diseases and those working to fuel research into finding cures. NORD estimated that there are 7,000 known diseases that fall into this category, impacting 30 million Americans.

“For those living with a rare disease, the awareness, education, and support of others is paramount,” said Peter L. Saltonstall, president and CEO of NORD. “‘Do Your Share for Rare’ is an attempt at more widespread awareness, which for someone living with a rare disease, means a great deal.”

The need to bring greater awareness to rare diseases was something of a surprise topic last night in President Trump’s address to a joint session of Congress. During his speech, the president called attention to 20-year-old Megan Crowley, a University of Notre Dame sophomore with Pompe disease, and the work of her father, John Crowley, to start his own biotechnology company to create a drug that keeps his daughter healthy.

Pompe disease is an inherited disorder caused by the buildup of a complex sugar called glycogen in the body’s cells, according to the U.S. National Library of Medicine. The accumulation of glycogen affects motor skills.

Trump used the Crowleys’ example to call for a rollback of Food and Drug Administration regulations in order to speed up breakthrough developments in fighting rare diseases.

“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,” Trump said. “In fact, our children will grow up in a nation of miracles.”


About the author

Phil Hall
Phil Hall is a former United Nations-based reporter for Fairchild Broadcast News, the author of seven books, the host of the SoundCloud podcast "The Online Movie Show" and a writer with credits in The New York Times, New York Daily News and Wired.

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