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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

House to Vote on New Version of 21st Century Cures Act Tomorrow

Written by Jennifer Huron on November 29, 2016

We are excited to announce that U.S. lawmakers have finally reached an agreement on the 21st Century Cures Act, a game-changer for patients with rare diseases. This agreement comes more than one year after the House passed its original version of the bill. The first vote is expected to take place… Read More

NORD Publishes Expanded Access FAQ

Written by Jennifer Huron on August 15, 2016

NORD has published a new website_ensuringaccesstoaffordabletreatmentguide to help people and caregivers living with rare diseases understand expanded access and how to access unapproved medicines.  In the guide, NORD answers frequently asked questions including how to determine if you are eligible for expanded access,… Read More