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September 12, 2018

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Research

Three Big Reasons Not to Miss the 2018 NORD Rare Summit

Posted at September 9, 2018 04:35 pm by Christina Jensen
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September 11, 2018

TOPIC: Featured News, Press Releases, Research

NORD Announces Ten New Rare Disease Registries, Thanks to Multi-Year Grant from Shire

Posted at September 9, 2018 10:23 am by Laura Mullen

Washington, D.C., September 11, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced the addition of ten new rare disease registries, made possible through a multi-year grant award from Shire.

NORD’s IAMRARETM Registry Program provides a web-based tool to collect patient experience and patient-reported outcomes data across… Read More

July 26, 2018

TOPIC: Patient Stories, Research

Giving Spotlight:  Honoring Mom-Mom’s Legacy with Research and Awareness

Posted at July 7, 2018 08:00 am by Jennifer Huron

 Editor’s Note: During the week of July 23-27, 2018, NORD featured pheochromocytoma as the Rare Disease of the Week in order to raise awareness for this rare type of cancer. The blog post below was written in November 2015, sharing the story of the Yankanich family who has been raising money for Pheochromocytoma research with NORD. After losing… Read More

July 19, 2018

TOPIC: Featured News, Industry, Medical, Patients & Members, Press Releases, Research

NORD’s RareEDU™ Launches Video Addressing a Topic Vital to Today’s Rare Disease Community, Gene Therapy: Your Questions Answered

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 Read More

July 11, 2018

TOPIC: Advocacy, Events, Featured News, Industry, Patients & Members, Research

FDA Commissioner Dr. Scott Gottlieb Confirmed as 2018 NORD Rare Summit Keynote Speaker

Posted at July 7, 2018 09:21 am by Christina Jensen

1200px-Scott_Gottlieb_official_portraitDr. 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