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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

State Report Card to Help People with Rare Diseases

Written by Jennifer Huron on December 13, 2016

rareactionnetworkWashington, D.C., December 13, 2016—A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new report released today by the National Organization for Rare Disorders… Read More

Rare Diseases & Orphan Products Breakthrough Summit Speakers

Written by Jennifer Huron on October 5, 2016

RareSummit_Logo_RGB_smallWashington, D.C., October 5, 2016 – NORD, the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today announced the three keynote speakers for its 2016 Rare Diseases & Orphan Products Breakthrough Summit to be held Oct. 17-18… Read More