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 the hundreds of pages and will provide comments to CMS on or before the due date. read more >
The rare disease community has lost a tireless and utterly dedicated advocate – Jennifer C. Jaff, Esq. Jennifer was an attorney who, as a result of her own nearly 40-year battle with a chronic disease, became a leading advocate for people with chronic illnesses. read more >
The terms risk, benefit, effectiveness, and safety are key to the approval of all new medical treatments (and of previously approved treatments for new uses). However, there is a vast divide between the concepts of relative risk and relative benefit (for a well defined group of patients) and the concepts of effectiveness and safety. The distinctions between these concepts are particularly important in the world of rare diseases. read more >
The elections are behind us and the lame duck Congress returns next week, hopefully to negotiate a solution to the looming “fiscal cliff” this country will face on January 1, 2013: sequestration, payroll taxes, and the Medicare “doc fix.” Sequestration, should it occur, means an across-the-board cut for federal agencies of at least 8.2%. read more >
I got a message just this morning telling me that the evolving Patient Centered Outcomes Research Institute (PCORI) is still looking for a wide variety of “non-scientist stakeholders,” including patients, caregivers, and advocacy group representatives, to act as reviewers of research grant applications submitted to PCORI in response to their recent funding announcements. read more >
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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