NORD recently announced its new chairman of the board. | Courtesy of Shutterstock
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Amanda Rupp | Jun 26, 2016

NORD names new chairman of the board

Leaders with the National Organization for Rare Disorders (NORD), the top independent advocacy organization dedicated to helping patients who have rare diseases, has named a new chairman of the board of directors: Marshall Summar.

Summar will replace Sheldon Schuster, the interim chairman; Schuster will now serve as the vice chairman of the board.

“Since its founding 33 years ago, NORD and the millions of people we serve have benefited from a board of senior leaders who share our vision of putting the patient first,” Peter Saltonstall, president and CEO of NORD, said. “We are pleased to continue this momentum under Dr. Summar as we build upon our resources and services that reflect changes in health care and patient needs.”

Summar works at Children’s National Health System as the chief of the division of genetics and metabolism. Children’s National Health System is the biggest clinical division internationally treating rare diseases. Summar is also the Margaret O’Malley chair of genetic medicine.

“Now is a crucial and exciting time in rare diseases with many opportunities that can both involve and benefit patients,” Summar said. “I welcome this opportunity to guide NORD on the sustained pursuit of its mission to eliminate challenges for all people affected by the 7,000 known rare diseases, 80 percent of which are genetic-based and less than 5 percent of which have a treatment.”

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