August 6, 2018
TOPIC: Featured News, Patients & Members
Posted at August 8, 2018 03:39 pm by Christina Jensen
Washington, D.C., August 6, 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 regarding the recent passing of Dr. Robert M. Campbell.
“NORD is deeply saddened to learn of the passing of Dr. Robert M. Campbell. A great friend to NORD, Dr. Campbell… Read More
July 19, 2018
TOPIC: Featured News, Industry, Medical, Patients & Members, Press Releases, Research, Sticky Posts for Homepage
Posted at July 7, 2018 10:17 am by Christina Jensen
Washington, D.C., July 19, 2018—The National Organization for Rare Disorders (NORD) today launched Gene Therapy: Your Questions Answered, a new video from its RareEDU educational program addressing some of the most commonly asked questions from patients and caregivers on the topic. It is available for viewing here.
July 11, 2018
TOPIC: Advocacy, Events, Featured News, Industry, Patients & Members, Research
Posted at July 7, 2018 09:21 am by Christina Jensen
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 Dr. Gottlieb’s update for the rare disease community.
In addition… Read More
July 9, 2018
TOPIC: Featured News, Patient Stories, Patients & Members, Uncategorized
Posted at July 7, 2018 09:55 am by Laura Mullen
The Joshua Frase Foundation (JFF) is a non-profit organization founded with a simple yet seemingly unattainable vision: to find a cure for Myotubular Myopathy (MTM). The journey towards a cure started the day Joshua Frase was born with a disease so rare that he was said to be only one of fifty five known cases around the… Read More
May 21, 2018
TOPIC: Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Research
Posted at May 5, 2018 03:36 pm by Christina Jensen
We are looking forward to bringing all stakeholders in rare diseases together once again for our annual Rare Diseases and Orphan Products Breakthrough Summit. We hope to see you there! Please mark the details below in your calendars and keep an eye out for a registration announcement in early June.
Rare Diseases &… Read More