Written by Valaree DonFrancesco on February 28, 2020
Washington, DC, February 28, 2020—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing over 25 million Americans with rare diseases, today launched the Undiagnosed Rare Disease Registry, a new study to collect de-identified information about hard-to-solve medical cases that will enable researchers to perform analyses at… Read More
Written by Valaree DonFrancesco on November 29, 2019
Hello! My name is Marissa and I had the privilege of joining NORD as a member of the Research Team earlier this year. Like many, my road to NORD began with a rare disease diagnosis. When I was five, I was diagnosed with Juvenile Rheumatoid Arthritis… Read More
Written by Lisa Sencen on December 13, 2018
For more than 35 years, NORD has been the voice of the rare disease community. Whether it’s advocating in Washington, protecting the Orphan Drug Act, working with the FDA to integrate the patient’s voice or providing assistance to those in need, NORD is the organization the rare disease community and… Read More
Written by Valaree DonFrancesco on October 18, 2018
Washington, D.C., October 18, 2018— Despite a record-breaking number of new approvals, orphan drugs remain a nominal part of overall drug spending, accounting for only 9.6% of total sales in the U.S. in 2017, according to a new study released today by the IQVIA Institute. The study… Read More
Written by Jennifer Huron on July 26, 2018
Editor’s Note: During the week of July 23-27, 2018, NORD featured pheochromocytoma as the Rare Disease of the Week in order to raise awareness for this rare type of cancer. The blog post below was written in November 2015, sharing the story of the Yankanich family who has been… Read More
