Written by Rohan Narayanan on February 15, 2022
Rare disease community eager to continue important partnership with FDA
February 15, Washington, DC – Today, the National Organization for Rare Disorders (NORD) President and CEO Peter Saltonstall issued the following statement following the confirmation of Robert Califf as… Read More
Written by Valaree DonFrancesco on October 5, 2020


The COVID-19 pandemic has caused great fears around drug shortages, the demand for personal protective equipment (PPE) and the status of clinical trial research for rare diseases. On September 16, NORD heard from… Read More
Written by Valaree DonFrancesco on October 1, 2020

Washington, DC, 10/1/2020 — Today, the National Organization for Rare Disorders (NORD®) opened registration for a natural history study on metachromatic leukodystrophy (MLD), a lethal rare disease currently without an FDA–approved treatment. NORD’s NaturalRead More
Written by Valaree DonFrancesco on May 13, 2020

NORD, KrabbeConnect and Partners for Krabbe Research invite you to register for an externally-led Patient-Focused Drug Development (EL-PFDD) virtual meeting on Krabbe disease, taking place Thursday, October 29, 12:30-4:30pm ET. Patients and caregivers impacted by Krabbe disease who are interested in participating at… Read More