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Archives for: June 29th, 2017

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

Written by Lisa Sencen 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

Living with ALPS

Written by Lisa Sencen on March 24, 2016

When Nicole was six months old, her mother, Laura Roublick, knew something was not right. After Nicole’s first year check-up, her doctors sent them on a long journey filled with hospital visits to find a diagnosis. Fortunately, the NYU Hospital for Cancer and Blood Disorders answered their cries for help. Nicole… Read More

Tougher than an NFL Football Player

Written by Lisa Sencen on March 17, 2016

“That would have been the easy way, but I chose to fight every step of the way!”

Although Brenda Fregger was born with a rare genetic marker called HLA B27, it was not until she was forty years old that this gene was discovered. Since the gene does not… Read More