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Archives for: July 20th, 2017

The BCRA and Healthcare Reform: NORD’s Latest Update

Written by Paul Melmeyer on July 20, 2017

A note from Paul Melmeyer, NORD’s Director of Federal Policy, on where healthcare reform stands as of today and how to get involved.


As part of our “Days of Action to Protect Your Healthcare Coverage” campaign, we want to be sure that you are up-to-date on the latest… Read More

The Undiagnosed: Orphans of the Rare Disease Community

Written by Paul Melmeyer on October 5, 2015

While the approximately 7,000 known rare diseases run the full spectrum of symptoms and experience, rare disease patients encounter many common obstacles. Rare patients face incredible difficulty finding safe and effective treatments, and even if such treatments exist, a multitude of reimbursement difficulties await.  Rare disease patients often wait years… Read More

Building on Policy Momentum

Written by Paul Melmeyer on February 3, 2014

The rare disease community has seen several policy wins in the past few months, some of which may have gone unnoticed. First, in November, Congress passed the National Pediatric Research Network Act as part of the PREEMIE Reauthorization Act. President Obama signed the measure into law on November 27th. … Read More