Written by Christina Jensen on August 9, 2018
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 Mary Dunkle on August 31, 2017
In an action the rare disease community has been eagerly awaiting, the Food and Drug Administration (FDA) has announced the first-ever approval of a gene therapy in the U.S. The product is Kymriah, and it is approved to treat certain children and young adults who have a cancer of blood… Read More
Written by Christina Jensen on August 15, 2017
It has been an interesting year for healthcare reform and the Orphan Drug Act, and as I’m sure you are aware; the conversation isn’t over yet. Major changes to healthcare and tax reform continue to be discussed and that is why it is so important that now, more than ever, rare… Read More
Written by Christina Jensen on July 20, 2017
Washington, D.C. July 19, 2017 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced two keynote speakers for its 2017 Rare Diseases and Orphan Products Breakthrough Summit, to be held October 16-17 in Washington, D.C.
The… Read More