NORD invites you to a virtual externally-led Patient-Focused Drug Development (EL-PFDD) meeting on Krabbe disease, taking place Thursday, October 29, 2020.
If you are a patient, family member or caregiver affected by Krabbe disease, this is an important opportunity to… Read More
Washington, DC, September 10, 2020–At a time when it is vitally important for the rare disease community to come together, the National Organization for Rare Disorders (NORD®) has announced a program of broad-ranging topics with speakers of unparalleled expertise for the 2020 NORD Rare Diseases… Read More
“Since 1906, FDA’s dedicated career employees have worked tirelessly to ensure that Americans have access to the safest supply of products we rely on every day, including food, drugs and medical devices. As a result, the US regulatory system sets the gold standard for the rest of the world. FDA’s… Read MoreNORD Issues Statement on Recently Introduced “Promising Pathway Act”
Written by Laura Mullen on June 26, 2020
NORD is deeply concerned about the “Promising Pathway Act” recently introduced in both the Senate and the House. Contrary to the stated goal of giving patients with serious and life-threatening diseases a “chance at receiving meaningful treatments,” this legislation, by its own terms, would lower FDA’s approval standards, exposing patients… Read More
FDA Oncology Center of Excellence Listening Session with NORD: A Patient Perspective
Written by Laura Mullen on June 24, 2020
A Note from NORD:
In May, NORD was approached by the Oncology Center of Excellence (OCE) at the US Food and Drug Administration (FDA) to collaborate on a new initiative to help enhance communication revolving around the conduct of clinical trials for rare cancer drug development during… Read More
