TOPIC: Patients & Members, Advocacy
Each year NORD provides a list of suggested activities for Rare Disease Day. This year, one of those major projects is a nationwide campaign to help leaders of rare disease patient organizations — and those who support them — educate their state officials for Rare Disease Day 2013 (Feb. 28, 2013). Read More
TOPIC: Featured News, Medical, Patients & Members, Research, Advocacy, Industry
FDA Commissioner Margaret Hamburg, MD, today announced a new public-private partnership to develop regulatory science that will speed patient access to new medical device technologies. This is the first public-private partnership specifically focusing on this need. (more…)
TOPIC: Advocacy
On November 20, 2012, the Centers for Medicare and Medicaid Services (CMS) released the long-awaited proposed rules for health insurance market reforms and essential health benefits. These provisions of the Affordable Care Act (ACA) are meant to protect patients with pre-existing conditions from discrimination and provide protections against other insurance company abuses. We’re now in the process of reviewing… Read More
