Written by Christina Jensen on February 3, 2017
By raising your hand, you can show your support for the 30 million Americans with rare diseases.
Simply click here and Lundbeck will donate $1 to rare disease research (up to $10,000 for the campaign). The donations will be added to a general research fund managed by NORD. The campaign will run through the month of February in honor of Read More
Written by Christina Jensen on August 18, 2016
Advanced Pricing Deadline is Friday, August 26
Register for NORD’s annual Rare Diseases & Orphan Products Breakthrough Summit (Oct. 17-18, Arlington, VA) by August 26 and save up to $400. More specific pricing information for the summit can be found here.
Poster Abstracts are due Friday, August 19
Calling all researchers… Read More
Written by Jennifer Huron on June 17, 2015
Today, the National Organization for Rare Disorders (NORD), Biotechnology Industry Organization (BIO), and Ernst & Young released “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases,” a new white paper examining the role of the Orphan Drug Tax Credit (ODTC) on rare disease drug discovery. Patients share… Read More
Written by Mary Dunkle on June 23, 2014
In 1992, Antje Hjerpe was diagnosed with a rare blood disease known as “essential thrombocythemia” or ET. A review of previous lab records showed that she had been living with this disease for at least six years prior to diagnosis. Read More
Written by Marsha Lanes on January 15, 2013
Whole genome sequencing (WGS) is the genetic test that determines the order of all 3 billion letters in a person’s DNA, and is a technology that has become well known to the rare disease community. It can reveal not only the genes responsible for production of an abnormal protein associated… Read More