Written by Rohan Narayanan on September 8, 2022
For the first time in history, the Galactosemia community came together for a historic meeting to share their experiences with the disease and treatments – and hopes for the future – with the US Food and Drug Administration (FDA). NORD is proud to be one of many patient organizations… Read More
Written by Valaree DonFrancesco on September 1, 2022
Be heard! Join a virtual meeting with the largest gathering of patients and the US Food and Drug Administration (FDA) on Thursday, September 1, 2022 from 11:00am-3:30pm ET.
Written by Rohan Narayanan on August 1, 2022
A historic, virtual meeting of the galactosemia community, FDA, and drug development leaders will be hosted on Thursday, September 1st
Galactosemia is a rare, hereditary disorder that affects the body’s ability to convert galactose to glucose. Galactosemia affects 1 in every 40,000 to… Read More
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
Written by Maia Craig on December 17, 2021
NORD, in partnership with the Critical Path Institute (C-Path) is proud to announce a two-part video series on patient-focused drug development (PFDD) as part of our Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) initiative.
The first video, What is Patient-Focused Drug Development (PFDD)?, provides a brief explanation of… Read More