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 (FDA), and the mounting challenges of access to quality insurance coverage for rare disease patients.
During the meeting, NORD addressed the unmet needs of rare disease patients. Specifically, NORD highlighted that only approximately 5 percent of rare diseases have an FDA-approved treatment, meaning that the majority of patients are still waiting for safe, effective treatments to be developed.
“We thank Secretary Azar for the opportunity to discuss the needs of America’s 30 million rare disease patients. We value our conversation about how the Administration can take steps to promote access to safe, new treatments for our patients,” said Peter L. Saltonstall, President and CEO of NORD.
The meeting reflects NORD’s efforts to voice the needs of rare disease patients at the highest levels of government. NORD is the leading independent nonprofit organization representing the 30 million Americans with rare diseases. Learn more about NORD’s policy work and how to join its efforts at rareaction.org.