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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

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

Dr. Arthur Caplan: 2016 Rare Impact Award Honoree

Written by Christina Jensen on May 11, 2016

When he was six years old, Arthur Caplan came down with polio and was temporarily paralyzed. That episode – which included time at Boston’s Mass General Hospital followed by rehab – “always left me with a patient perspective,” Dr. Caplan says.

That perspective and his tendency… Read More