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… Read More
Written by Laura Mullen on September 21, 2020
Krabbe Community United Research and Engagement Study (KrabbeCURES)
We are pleased to announce the launch of KrabbeCURES, a collaborative effort between KrabbeConnect and the National Organization for Rare Disorders (NORD) to study globoid cell leukodystrophy (Krabbe disease). KrabbeCURES supports research on Krabbe disease and how it progresses over time.
OVERVIEW OF RESEARCH… Read More
Written by Laura Mullen 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
Written by Jennifer Huron on September 15, 2016
The Hill, a top U.S. political website, read by Congressional offices, the White House, political pundits, and more, today published the following op-ed by NORD President and CEO, Peter L. Saltonstall, urging Congress to reauthorize the Rare Pediatric Disease Priority… Read More