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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, Sticky Posts for Homepage

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

June 27, 2018

TOPIC: Featured News, Patient Stories, Research

Spencer and Levy-Yeboa Syndrome, the Story of Our Son

Posted at June 6, 2018 09:56 am by Christina Jensen

NORD’s Rare Disease of the Week is Levy-Yeboa Syndrome, a very rare inherited, multi-system disorder. For more information about this disorder, you can visit the Levy-Yeboa Syndrome Rare Disease Report here. The guest blog post below was written by two parents of a child, Spencer, who passed away from Levy-Yeboa Syndrome, Stacy and Bobby Maxwell. After their… Read More

May 24, 2018

TOPIC: Featured News, Press Releases, Research

New Research Funding Opportunities Available from NORD

Posted at May 5, 2018 10:25 am by Laura Mullen

All U.S. and international researchers are encouraged to apply by the initial application deadline of July 16, 2018


Washington, D.C., May 24, 2018 – The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, announces the availability of new research grants to support the study… Read More