Scroll
To Top

December 14, 2012

TOPIC: Advocacy, Patients & Members

Campaign to Educate State Legislators for Rare Disease Day

Posted at December 12, 2012 08:34 pm by admin

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

December 3, 2012

TOPIC: Advocacy, Featured News, Industry, Medical, Patients & Members, Research

Patients Will Benefit From New Public-Private Partnership

Posted at December 12, 2012 09:53 pm by

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…)

November 28, 2012

TOPIC: Advocacy

Proposed Rules for Health Insurance Market Reforms and Essential Health Benefits

Posted at November 11, 2012 02:20 am by

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