Written by Laura Mullen on October 3, 2018
Washington, D.C., October 3, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today is celebrating five years of patient registry success with the announcement of a new multi-stakeholder model of engagement in collaboration with the Foundation for Prader-Willi… Read More
Written by Jennifer Huron on September 6, 2018
2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary. For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate. Our policy, research and other efforts have played a significant… Read More
Written by Jennifer Huron on October 5, 2016
Washington, D.C., October 5, 2016 – NORD, the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today announced the three keynote speakers for its 2016 Rare Diseases & Orphan Products Breakthrough Summit to be held Oct. 17-18… Read More
Written by Jennifer Huron on June 30, 2016
The Commissioner of the U.S. Food and Drug Administration, Robert Califf, M.D., will speak at NORD’s annual Rare Diseases & Orphan Products Breakthrough Summit in October.
Commissioner Califf will provide an opening Keynote Address. As the senior official of the… Read More
Written by Jennifer Huron on January 15, 2015
In a new interview with Medscape, Marshall L. Summar, chief of genetics and metabolism at Children’s National Medical Center in Washington, D.C. and NORD 
board member, talks about the importance of patient registries for rare diseases, and the… Read More
