Written by Christina Jensen on May 10, 2017
Washington, D.C., May 10, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on the confirmation by the U.S. Senate of Scott Gottlieb, M.D., as Commissioner of the Food and Drug Administration (FDA):
“We at the National Organization for… Read More
Written by Jennifer Huron on April 5, 2017
Lawmakers are currently considering legislation to reauthorize FDA user fees. The FDA largely relies on user fees to operate and review innovative drugs, biologics, and devices. Not only does this legislation provide critical funding for FDA to quickly review products, but the user fee agreements also provide patients and… Read More
Written by Jennifer Huron on March 31, 2017
Research study is open to participants worldwide to advance understanding and treatments for rare disease causing blistering that may be accompanied by severe pain, itching, burning, and stinging.
Sacramento, CA and Washington, D.C., March 31, 2017—The International Pemphigus &… Read More
Written by Jennifer Huron on March 21, 2017
Washington, D.C., March 21, 2017—The National Organization for Rare Disorders (NORD) and Friends of Cancer Research, two leading organizations that collectively represent millions of Americans with cancer and rare diseases, issued the following statement in advance of this week’s… Read More
Written by Jennifer Huron on March 1, 2017
NORD Issues Statement on President Trump’s Address to Congress
Washington, D.C., March 1, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to President Trump’s first speech to Congress:
“Yesterday evening, President Trump… Read More
