Written by Valaree DonFrancesco on February 26, 2021
PharmaBoardroom, an international pharmaceutical industry media outlet providing industry trends, news and reports geared to senior professionals, recently interviewed Pamela Gavin on the importance of health equity and what NORD is doing towards achieving equity for the rare community in the United States.
The interview can be read in its entirety… Read More
Written by Valaree DonFrancesco on September 19, 2019
Launched by C-Path and NORD through an FDA grant, the goal of the new platform is to accelerate the development of cures by addressing the need to better characterize rare diseases.
TUCSON, Ariz. and WASHINGTON, September 19, 2019 — The Critical Path Institute… Read More
Written by Lisa Sencen on August 7, 2019
The collaborative project between the organizations will kick off at a launch meeting in September and will aim to reduce barriers for the development of new treatments and cures for rare diseases.
TUCSON, Ariz. and WASHINGTON, Read More
Written by Lisa Sencen on June 13, 2019
The following story was submitted by Jenny Malec in honor of June’s Rare Spotlight, Appendix Cancer and Pseudomyxoma Peritonei (ACPMP). In this story, Jenny reflects on her life-changing experience after undergoing a clinical trial for ACPMP. A special thanks to NORD’s… Read More
Written by Valaree DonFrancesco on September 11, 2018
Washington, D.C., September 11, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced the addition of ten new rare disease registries, made possible through a multi-year grant award from Shire.
NORD’s IAMRARETM Registry Program provides a web-based tool… Read More