Patient Empowerment Network recently interviewed Rare Action Network Volunteer State Ambassador for Illinois Maria Bellefeuille on being both a rare disease patient and advocate. Maria will be speaking at this weekend’s Living Rare, Living Stronger NORD Patient and Family Forum on the “Long-term Survivor Panel: Tips, Tricks & Life Hacks for Living Your Best, Rare Life!” panel, which… Read More

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.