Washington, D.C., June 15, 2018—On Wednesday, staff from the National Organization for Rare Disorders (NORD) met with Health and Human Services (HHS) Secretary Alex Azar to discuss the needs of rare disease patients. The meeting covered orphan drug innovation, growing patient involvement at the Food and Drug Administration… Read More
Washington, D.C., May 4, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the passage of the American Health Care Act:
“Today the House of Representatives passed American Health Care Act (AHCA). We… Read More
32nd Edition of Skechers Performance Los Angeles Marathon Set for March 19, 2017
Washington, D.C., September 30, 2016—Running for Rare was named an Official Charity Partner of the 2017 Skechers Performance Los Angeles Marathon, it was announced today by… Read More