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Archives for: October 29th, 2020

Krabbe Disease: Externally-Led Patient-Focused Drug Development Meeting

Written by Valaree DonFrancesco on October 29, 2020

 

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 have your voice heard. 

EL-PFDD… Read More

NORD 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