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Archives for: September 8th, 2022

NORD Hosts the Largest Gathering of a Rare, Post-Transplant Cancer in History

Written by Rohan Narayanan on May 11, 2022

Post-Transplant Lymphoproliferative Disorder (PTLD) is a rare cancer related to organ and stem cell transplants, as well as Epstein bar disease. There is no nonprofit organization dedicated to this community and the last known gathering involved less than a dozen patients and caregivers, pre-pandemic. When NORD learned of interest… Read More

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