Written by Christina Jensen on August 9, 2018
Dear Reader,
I want to invite you to join me and 700 others from the rare disease community at our annual Summit. This year, NORD’s 2018 Rare Diseases and Orphan Products Breakthrough Summit will take place October 15-16 in Washington, D.C.
We expect this year’s Summit to again be the… Read More
Written by Christina Jensen on July 11, 2018
Dr. Scott Gottlieb was sworn in as the 23rd Commissioner of Food and Drug Administration in 2017, and provided a keynote speech at the NORD Rare Summit shortly thereafter. 2018 marks his second year at the Summit, and we look forward to… Read More
Written by Christina Jensen on July 9, 2018
On July 9, 2018, FDA is hosting a public meeting on Patient-Focused Drug Development for Chronic Pain. FDA is interested in hearing patients’ perspectives on chronic pain, views on treatment approaches, and challenges or barriers to accessing treatments for chronic pain. FDA is particularly interested in hearing from patients who… Read More
Written by Christina Jensen on June 27, 2018
Washington, D.C., June 27, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement regarding this week’s actions by the Centers for Medicare and Medicaid Services (CMS) to protect patient access to medication…
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Written by Christina Jensen on May 22, 2018
Washington, D.C., May 22, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement following today’s passage of the Right to Try Act (S.204) in the House of Representatives:
“Today, the House of Representatives passed the…
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