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
#NORDinthenews
NORD is featured as a rare disease resource and Dr. Marshall Summar, Chairman of NORD’s Board of Directors, is quoted extensively in an article published by US News and World Report that provides information and advice for parents dealing with a recent rare disease diagnosis for their child.
https://health.usnews.com/conditions/articles/when-your-child-has-a-rare-disease
On Friday, November 1, 2019, the White House announced the nomination of Dr. Stephen Hahn, MD, as the next US Food and Drug Administration (FDA) commissioner. In response, the National Organization for Rare Disorders (NORD) offers support to the appointment of Dr. Hahn as the next FDA commissioner.
Dr. Hahn will… Read More
On September 5, 2019, Takeda issued a recall of NATPARA® (parathyroid hormone), due to rubber particulates originating from the rubber septum of the NATPARA cartridge. As of October 9, NATPARA® is in shortage.
NORD has reached out to the Food and Drug Administration (FDA) on behalf of… Read More
We’re delighted to announce that Acting FDA Commissioner, Norman E. “Ned” Sharpless will deliver the keynote address at this year’s Rare Diseases & Orphan Products Breakthrough Summit. Sharpless, a physician and scientist, became Acting Commissioner of FDA earlier this year and previously served… Read More
