Written by Laura Mullen on March 2, 2018
*The following is a a guest blog posting by NORD’s Director of Research Programs, Vanessa Boulanger, originally published 2/28/18 on PCORI.org at https://www.pcori.org/blog/changing-landscape-rare-disease-research?utm_source=general`
A rare disease, by definition, affects fewer than 200,000 individuals in the United States. Up to 30 million Americans have a rare disease, and most conditions are poorly… Read More
Written by Jennifer Huron on November 3, 2016
Washington, D.C., November 3, 2016—The Fibrous Dysplasia Foundation and the National Organization for Rare Disorders announce the launch of an ambitious study to research fibrous dysplasia/McCune-Albright syndrome (FD/MAS). The new study, the FD/MAS Patient Registry, creates a platform for patients… Read More
Written by Jennifer Huron on June 15, 2016
The National Organization for Rare Disorders (NORD), the leading, independent advocacy organization committed to helping the 1 in 10 Americans with rare diseases, has appointed Marshall L. Summar, M.D., as… Read More
Written by Jennifer Huron on July 16, 2015
Training Program for Patients and Caregivers Will Be Offered at NORD’s Annual Rare Diseases and Orphan Products Breakthrough Summit in October
An award from the Patient-Centered Outcomes Research Institute (PCORI) will help the National Organization for Rare Disorders (NORD)… Read More
