BioNews Service reporter Larry Luxner attended the 2019 NORD Rare Diseases and Orphan Products Breakthrough Summit in Washington, DC in October, and has since written two articles based on Summit content.

Sickle Cell Disease News published the following article, centered on HHS Secretary Alex Azar’s Summit speech and comments regarding progress on the sickle cell disease front, on December… Read More

NORD has released a statement on today’s House Committee on Oversight and Reform’s Subcommittee on Civil Rights and Civil Liberties hearing on the Administration’s recent revocation of medical deferred action policy and its potentially devastating impact on the rare disease community. The statement in its entirety can be read here.

Grant program established with gift from Retrophin

Washington, DC and San Diego, May 20, 2019–The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has launched the Rare Caregiver Respite Program, a first-of-its-kind program aimed at providing caregivers of rare disease… Read More