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Archives for: May 2nd, 2017

Patient Advocacy Organizations Outline Joint Position on Expanded Access to Experimental Drugs for Seriously Ill Patients

Written by Lisa Phelps on May 2, 2017

WASHINGTON, D.C., May 2, 2017–Seven patient advocacy organizations today laid out a joint set of principles to guide any efforts that seek to change the process of accessing unapproved therapies outside of a clinical trial, also known as compassionate use or expanded access. The patient advocacy organizations include: Alliance… 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