To Top

Archives for: March 16th, 2021

NORD Joins with the Krabbe Disease Community to Publish “Voice of the Patient” Report

Written by Valaree DonFrancesco on March 16, 2021

Washington, DC, March 16, 2021—The National Organization for Rare Disorders (NORD)®, together with KrabbeConnect, The Legacy of Angels Foundation, Partners for Krabbe Research, Hunter’s Hope and with additional support from Gain Therapeutics, Magneta Therapeutics, PassageBio and Neurogene, has published the “Voice of the Patient” report sharing the stories of patients… Read More

NORD and KrabbeConnect Launch KrabbeCURES to Study Globoid Cell Leukodystrophy

Written by Valaree DonFrancesco 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.