Blog

The endowment will support clinical care team dedicated to providing rare disease patients with earlier intervention and more consistent treatment over the course of their lifetimes.

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Made possible by a six-year commitment from biopharmaceutical company Retrophin, the Retrophin Rare Disease Network at Children’s National will support the further research and study of rare diseases in children and adults.

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Grateful families like the Ebersteins participate in the Race for Every Child each year to show appreciation for Children's National and to help kids across the region grow up stronger. Read more about the Ebersteins and learn why you should join them at the 5th Annual Race for Every Child on October 21, 2017.

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The Triptow family was determined to raise awareness about their daughter’s rare genetic disease. Together, with friends and family at their side, they organized the Hope 4H Syndrome Golf Tournament in Brunswick, Ohio, and raised $15,000 for Children’s National to support research that may someday result in a cure.

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The Washington Business Journal recently asked Dr. Marshall Summar, division chief of genetics and metabolism at Children's National, about a question he frequently hears: "Why do you study rare diseases when they affect so few children?"

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